The second opinion advice is great, and what I tell everyone I know who gets cancer.
My mom was diagnosed with stage 1 cancer in 2006 in Idaho. I was a PhD student at MIT at the time and a friend in lab helped me get an appointment at Dana-Farber. I thought it was probably overkill (it was a common cancer) but we did it anyway. They said everything in Idaho was standard of care but suggested one extra test, which Idaho team then reluctantly did, which revealed distant metastasis (stage 4! ), dramatically changing her treatment trajectory. She lived another 15 years (I miss you Mom).
Asking for a second opinion sucks. A lot of us are preconditioned from birth to trust our clinicians. But you're going on a journey and your life (or the life of your loved one) is on the line. Insurance often covers it. Your doctor will NOT be offended.
Think of it this way : if you were deploying code to the mars rover, and your colleague asked to do a code review before you pushed go, would you be offended? This is even more important than that.
The second opinion thing has something I learned along the way. Get it BEFORE you have a treatment plan from the initial diagnosis. We got two second opinions (one for her first diagnosis and one for her recurrence) for my wife's ovarian cancer from Cleveland Clinic and MSK and in both cases the doctors would not advise/override the original doctor's treatment plan.
They were complete no-ops and a waste of time. Faced with that same situation today I would simply lie about whether or not a treatment plan was put into place.
Second bit of advice is to try as best you can to go into clinical trials with an understanding of the landscape of disqualifying treatments. Any immunotherapy treatment, for example, will disqualify you from nearly all subsequent clinical trials for immunotherapy.
Lastly the thing I would recommend for partners of loved ones in the crucible, don't get too distracted by trying to 'save the patient' that you miss opportunities stay connected with them in the process. It's not your responsibility to save their life, as much as it might feel that way when you're in the thick of it.
> Second bit of advice is to try as best you can to go into clinical trials with an understanding of the landscape of disqualifying treatments. Any immunotherapy treatment, for example, will disqualify you from nearly all subsequent clinical trials for immunotherapy.
While using this information for comparing clinical trials is fine, I want to emphasize that it would be phenomenally short-sighted to skip first-line approved immunotherapy in order to preserve the option for some random trial later on.
I'm not sure if you're actually suggesting this, but immunotherapies are some of the best cancer therapeutics that exist, so skipping approved drugs for future experiments is just a bad idea.
Well pointed out and I completely agree with your take.
In our case it was a clinical trial that the oncologist was aware of and we got in. I'd obviously heard of clinical trials but that was my introduction to the machinery by which they operate.
This may be a philosophical point of view, but I do not see much personal value in clinical trials. You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.
Most studies that which reach stage 3 will not be approved, and that's because they're found to to be unhelpful or even harmful. So the most likely scenario is you do nothing or even hurt yourself by seeking out clinical studies, all of which will be optimistically framed as promising and potentially revolutionary. This can be particularly dangerous if you're opting into a trial in lieu of the standard treatment, as opposed to in addition to such.
I would just say that ‘dangerous’ is relative and when the standard of care leaves effectively no hope, your tolerance for risk can change. Yes this does increase that chance of shortsighted decisions or manipulation. That just comes with the territory, I’m still very appreciative that we have the option to elect to participate in the peocess.
The bigger problem with trials is not the danger, so much as the fact that they're unlikely to do anything.
As GP noted, most drugs don't work. To make it a bit more specific, even in phase 3, the failure rate for cancer drugs is something like 50%. And that's typically for some non-survival endpoint (assuming you even get the treatment, which is itself a coin flip).
Clinical trials are noble, admirable things to do, but too many people think of them as treatments, when they really are not. They're an experiment that you do with your body when you reach the end of the road and there are no more options.
It always makes me a little sad to hear how patients talk about trials and fight to get into them, as if being in the trial is somehow progress. Expectations are not being managed properly.
>The bigger problem with trials is not the danger, so much as the fact that they're unlikely to do anything.
And? What is the point of this observation? Of course they are unlikely to do anything. Your other option is to do nothing and die. Nothing wrong with that if that's what people choose to do...'accept their fate' and all that. I'm not opposed to it at all, there's a certain appeal to it.
But when your wife and the mother of your two beautiful daughters is laying helpless on nature's altar you fucking move dude. You don't do nothing.
The point is exactly what I said: “doing something”, in this case, is not the same thing as “saving your loved one’s life.”
> Your other option is to do nothing and die
I really don’t want to be this blunt, but I don’t know how to say it any other way: death is not an option. When you’re at the stage of clinical trials for cancer therapies, it is the inevitable outcome. Otherwise, you wouldn’t be in the trial. Maybe it extends the inevitable, maybe it doesn’t. The odds lean heavily toward the latter. And there’s also always a cost.
I’ve lost friends and family to cancer too, and watching people you love torture themselves with ineffective (or even minimally effective) treatments is agonizing.
When it comes to clinical trials, you need to start with the cold, hard reality that you’re doing an altruistic experiment with the remaining portion of your life. There are lot of people who don’t understand that, and see trials as some kind of back-door to better treatment.
> You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.
The probability that I think you're talking about here is not actually relevant, given that the trial is already underway. Basically, the "potential advance" event has already happened. (Similarly, the probability of getting shot by an arrow is not relevant once the arrow's already poking out of your body.)
Given the trial is already underway, the probability that matters is the fraction of treatment candidates at the phase you are considering that make it all the way through; for phase 3 trials, this is 58-65% [0], which is actually pretty good. Of course, rates for earlier phases are much worse because there's attrition at each phase.
A treatment being approved doesn't mean it's more effective than existing treatments, only that it is effective. And even then, not always as in the case of the controversial Alzheimer's drugs. Looking up some exact numbers on this, for oncology/cancer about 35% of treatments at stage 3 trials will end up approved/produced. [1] This [2] study looked at the 632 medicines approved (in the French market) and found that 25 ended up providing a substantial clinical benefit relative to existing treatments, so a bit under 4%. Even with just those two multipliers you're looking at around a 1% chance of the outcome most people are aiming for with trials.
I lost somone to a rare cancer with almost zero chance of survival. A treatment with 65% success was available 30 days after they died. Ill always wonder if things could have been different. Maybe if we looked harder for trials but like you we thought it a hopeless waste of the limited time left.
I’m sorry for your loss. Words from an internet rando don’t mean much, but you did the best that you could so don’t worry about what ifs. Do your best right now.
That last point is probably the hardest one to actually follow. When someone you love is sick, I imagine it's easy to turn every waking hour into researching treatments, chasing appointments and etc. It probably feels like doing anything less means giving up
(I treat patients at a cancer center, but opinions are my own and not those of my employer.)
I fully encourage any patient who wants another opinion to get one. Definitely really good advice to seek one out before you start on your treatment plan, if it can be done without undue delay. I think of planning cancer treatment like lining up to take off for a flight: some plans even if imperfect are more dangerous to alter than continue if they've already been put in motion. There are--rarely, thankfully--times where we don't end up concurring at all in the diagnosis or treatment, and this is all best sorted out before the first treatment.
But a second opinion isn't a waste just because it agrees with the initial plan. In my experience, that's actually the most common outcome, and I think it's a really good thing if a second opinion can give deserved reassurance that your original team is doing everything by the book. For many common cancers, there's consensus as to the most appropriate first-line treatment because there's peer-reviewed evidence and agreement on how to apply that evidence. When all of it points towards an effective treatment, down to a standardized dose and schedule, and it's a really good thing!
There's some subtlety that arises when there isn't a clear consensus as to which of (say) two reasonable approaches used by different comprehensive cancer centers is best. If you look at guidelines, both of those approaches would be listed as appropriate, but patients might be recommended one plan at center A and a different one at center B.
What it can come down to is that center A delivering treatment A demonstrates comparable results to center B delivering treatment B. In that scenario, if a patient lives down the street from center A and travels hundreds of miles to see me for a second opinion at center B, I would almost always agree with getting treatment A at center A. Not because I'm trying to manage what center A would think of me, but because I'd truly believe it's in that specific patient's best interest. First, all else being equal, I'd have no grounds to think that traveling hundreds of miles to get treatment B at center B would be better than staying local. Second, in general, I'd strongly doubt that getting treatment B at center A (which wouldn't be the plan they'd have the most experience with) would be superior to getting treatment A at center A.
And, yes, I absolutely have recommended when appropriate for patients to transfer care to our center, and I have also recommended when appropriate for patients to leave our center to go elsewhere (for example, for a particularly promising clinical trial option). I've seen every one of my colleagues do the same without hesitation.
This is all just from one person's perspective, of course. I know patients and families can come from different and totally valid vantage points. But to sum it up, please don't worry about managing your doctors' emotions about getting a second opinion, and find a place where you can be confident that the folks giving you their second opinion likewise aren't thinking about managing your doctors' emotions. Hopefully, they'll earn your trust that a concurring opinion means they really do think your original team has laid out the plan that's best for you.
I’m curious: why isn’t a “second opinion” included in the standard medical protocol?
As an engineer, embedding such a check step (basically a PR review for your body!) in the standard workflow feels very natural. But in the medical context, getting a second opinion usually needs extra effort by the patient and often involves awkwardness.
It feels involving too much friction given the high stakes. What is your opinion on this?
There is a standard practice at cancer centers which would be more the equivalent of PR review. Often it’s called “tumor board” but names vary (ours is called “case conference”). Depending on the institution and department, all, most (anything but the most straightforward), or some (unusual, advanced, prompted by patient discussion, etc.) cases are brought up for a consensus opinion. Like PR review, the format and formality of this process will differ institutionally, but some version of it is standard as part of the “workflow.”
If the specific department reviews all or most cases as a matter of course, it may not even be mentioned to patients (let alone requiring them to ask for it) unless the consensus opinion alters the original plan. Pathology or radiology consensus interpretations if they occur usually precede the issuance of a final report (so as to avoid giving one interpretation that’s potentially acted on but then amended) and are notated with specific verbiage.
A second opinion generally means transferring records and tissue samples outside the original institution. Think of it more like assigning the same bug report to two teams. There is a role for this, but I wouldn’t think of it as PR review.
I'm not the poster you're responding to, but I suspect (bitterly) that it's because engineers and architects are held liable if their inattentiveness to detail causes someone to die, whereas medical professionals are not unless they do something so wildly negligent that you could prove it led directly to an already sick patient's death. (And even then). In most engineering scenarios, there's a paper trail leading back to every decision, and what you're working on is a determinstic system with known inputs and expected outputs. In the medical field, it seems as if a second opinion is more akin to getting food at a restaurant and then taking it to another restaurant to ask the chef if it's too salty. The inputs are subjective, the results can't definitely be traced to them, and no one expects anyone to live through the meal anyway.
Thanks for writing this. It's really thoughtful. My Dad is being treated for Stage 3 at the moment, and after months of delay was told that he wasn't on "real" chemo, just some sort of palliative treatment. No one can get a clear read on what the doctors told him, and he's fairly confused himself... it's basically a nightmare game of telephone.
When it comes to what the OP was talking about... those of us who are conflict-averse and can't get ourselves to make dozens of unanswered phone calls, are we just shit out of luck if we get into that situation? As much as I hate it now if it involves disputing a mistaken Amazon purchase, I imagine I would just give up if I were already suffering. Is handling bureaucratic gatekeeping the only way to get care, outside a top tier cancer center, in your opinion? My dad's got some money, he's got private insurance. I want to say that if I were him I would have hired an advocate of some sort, to process all of this. I don't even know if a thing like that exists.
I’m so sorry you’re dealing with this. One thing I would strongly suggest is look for the patient advocacy/advocate for the organization handling your dad’s care. They helped me in one case with my wife’s care, which unfortunately was beset with incompetence and indifference from the start.
Memorial Sloan Kettering is widely considered one of the best treatment centers for gynecological cancers, and they were completely useless for us. The Dr. spent about 15 minutes talking to us and reviewing the case, gave no advice, said nothing in favor of or against the current plan and just said to reach back out after the current treatment plan played out.
This was six years ago and I still can’t think about it much without raising my blood pressure.
Anyway, patient advocate and phone calls/office visits are about the only tools you have. It can be a full time job keeping things on track.
In the U.S., many hospitals have some sort of patient navigator or advocate. I’m aware of at least some insurance companies even offering such services (although I can’t speak to whether they are necessarily well aligned with patient interests). See if you can request these services.
A trusted family member is always a huge help at appointments: even if it’s infeasible to go in person, ask to listen in remotely. I’ve been in those shoes too.
Be overcommunicative, be the squeaky wheel: for our part, we know the difference between even zealous advocacy (great!) from disruptive behavior (not so great!).
Sorry, the system can suck. I promise you that every oncologist has had to make those unanswered calls too, so we do know something of this end of things. But you and your loved ones don’t deserve to suffer for it, so don’t be shy.
We had something similar with my father in law who just passed from pancreatic cancer.
The doctors each saw one small part of the case, he was being passed between multiple doctors and NPs. There was no coherence. At one point he ended up on so many medications that made no sense he passed out. Only at the hospital when a doctor looked at everything together did they realize what a mess had been created and got him back on his feet.
I ended up giving all of his records to an agent and making it the coordinator. It found a bunch of problems. He was being given the wrong pain medication on the wrong schedule, the moment that was fixed he felt a lot better (unfortunately he lost so much weight on the wrong schedule it's what got him in the end). They also use voice transcription software, which led to a key error about what genetic markers he had. Fixing this changed his treatment plan!
In general, I wish we had been much more aggressive with this. Last time we had a major medical issue an NP almost killed my wife. At the time there was no AI, so we just had to recognize things were in decline and start being aggressive about getting in with the right doctors (the moment we found the right one she was diagnosed, had surgery and was cured in weeks).
He started doing better when the AI became the central coordinator and doctors/tests/etc. became their inputs. It was an excellent advocate. And while we have science backgrounds, we aren't doctors. But it could present evidence for actions in ways that the doctors appreciated (his oncologist was impressed and called the AI a member of the team).
Unfortunately his physical reserves were very drained at that point. He probably would have had another 6-12 months with his family if it wasn't for the disorganized mess of a care system that we have.
I've had a lisfranc injury, which while not life threatening is very serious and the quicker the surgery is done, the better outcomes.
My podiatrist did X-Rays incorrectly, I told her I'm seeking 2nd opinion just to confirm her findings. I've found a guy that specializes in lisfranc at Rush. He performed correct weight bearing x-rays. It was a bad sprain and not a torn ligament. It took 12 months to completely heal but I was walking mostly normally after 4 months.
Always SEEK 2nd and 3rd opinion if it is something serious. You can also "find" algorithms use for diagnosing and treating suspected condition to make sure your physician is up to speed.
Not all physicians are equal. They also deal with burn out, and have better and worse days.
Yeah absolutely on the 2nd opinion, my dad went into his GP and said “I think I have lung cancer”, after a period of difficulty breathing and low energy. The GP diagnosed him with low iron and gave him some iron supplements, didn’t even get a scan. A few months later he had to have a couple of litres of fluid drained from his lungs while on holiday, turned out to be mesothelioma. Obviously we’d prefer it to be low iron, but better to know what is going on and be able to respond to it.
> if you are within a 2-3 hour drive of a major cancer center, go there instead of your local community hospital
This is possibly bigger than second opinions if it's an option for you. Part of it is just volume, the big national cancer hospitals see so many cases that they have super specialized departments & doctors to deal with much more niche areas of expertise.
Your local hospital might have "the skin cancer doctor" but MSK has ~20 sub categories of skin cancer with different doctors specializing in each. And so on for each area/type.
A relative of mine had a rare form of (very treatable) childhood cancer in the NYC metro area. It was diagnosed eventually by the local oncologist in the local hospital. His parents were ready to use the local hospital/doctors until the conversation turned to "and how many of these have you treated before and how did it go?". Sheepishly the doctor said "once and uhmmm, well.. it went ok".
So they sent the files (back in the physical paper files via mail era) to MSK and saw a super specialized treatment team that dealt with this regularly, successfully.
I'll second this and share my father's experience. He spent most of his adult life in PA, but he and my mom moved to SC partially for finical reasons when COPD forced him into early retirement--his brother and business partner was also moving too.
Anyhow, a few years back he found out while being evaluated for a lung transplant at Duke he had stage 2 lung cancer (I don't recall the type). They had actually missed it six months prior on an earlier scan. Thereby dashing his hopes for a transplant. Long story short my brother convinced him to head to UPENN for a second opinon. Where they were at the time, one of a handfull of places in the country that did proton radiation. His SC team convinced him to do one round of chemo as he couldn't get into PENN for another 5 months. He has been cancer free for a few years now. And they credit the Proton radiation.
> A lot of us are preconditioned from birth to trust our clinicians.
As a Asian, this is really fascinating to me. We, in general, are conditioned exactly the opposite. We don't trust our doctors, govt or anyone other than our immediate family. Taking a second opinion is just normal. As someone who now lives in the "west", and is now taking a second opinion for a condition, my doctor here was almost offended when I asked for a copy of my results in order to take a second opinion.
That's really cool and surprising to me. I always expect Asians to be very "lawful" and rule following and trust authority. Glad I was wrong on this one.
> if you were deploying code to the mars rover, and your colleague asked to do a code review before you pushed go, would you be offended?
Having done so, from both the asking and being asked, yes I was offended. And glad I was asked after actually doing it. And learned to be insistent in asking. We all have hesitation but we should realize that “expertise” is a relative illusion and peer review is the only standard of progress we have ever demonstrated to be (eventually) fool proof. There are no people I trust in any field to be right for the sake of their name or accomplishments. Society needs that feeling to be stymied and eventually eliminated.
Maybe things have changed, but in my day when deploying code to an interplanetary spacecraft, code reviews (emphatically plural) were not optional, and being offended by them would have been a career-ending move.
It definitely feels less personal when you ask AI to find weaknesses in your code. I do it all the time, but I am also sure that I am bothering nobody.
Other story, for balance: My father was diagnosed (again, in Idaho) with a rare ocuclar melanoma. Very few cases, but highly treatable. The specialist was in SF where I lived at the time. We went there, and it was a very different experience from Dana-Farber. The clinician was an academic who only saw patients like once a week. People were sitting on the floor lined up out the door.
His staff was gruff, there was such limited information as we progressed through the system, there were so many patients there from all over the western part of the US. For many of them it was their first time with cancer, and sitting there in the waiting room with my (non-medical!!!) bio training my Dad would often offer my services to "explain" something. Which I did, and I think I helped, but it was all rough.
The main doctor was so gruff and obnoxious that I emailed my MD friends in Boston (was still in grad school) asking how I could file a complaint.
But at the end of the day that process helped my father (and many of those other people ) get state-of-the-art proton beam therapy, covered by insurance.
Sadly my dad's cancer came back a short time later and he passed away (miss you too Dad).
But now, 15 years later, having been through the healthcare system in so many ways, and having many friends who are academic specialist MDs, I recognize that the doctor in SF was operating with incredible constraints, finite resources, and probably tired. And my Dad got the best possible treatment technology as a result of the second opinion.
But at the time I wanted to strangle the doctor.
I'm writing this just to say that sometimes the second opinion is tough. Sometimes it's in a far-away place or the doctors are jerks. Maybe even borderline unprofessional. They're the bastard operator from hell in their own little world. But again, this is life-and-death.
GET THAT SECOND OPINION EVEN IF THE DOCTOR IS A DICK.
Regarding gruff doctors: the least pleasant doctor I ever had was also the best I ever had. I found him offputting (outright rude at times) but he did the surgery and the after surgery bits with a high level of confidence. Over time I've learned to work well with doctors- they have a high opinion of themselves and don't like to be challenged, they have a whole collection of tools and care standards they normally follow, and they tend to be generally intelligent. They need to be handled carefully if you want to get the best out of them.
I think it's pretty easy to understand why. When somebody is very ill, they think their illness is the most important thing in the world, and it certainly is to them. But to a doctor, they're just one of the thousands of patients, all of whom think the same thing, that they've seen that year.
And everybody thinks that with perfect medical treatment, they'd be healed, when in reality that isn't the case. Some conditions are simply terminal and the best treatment in the world isn't going to change that. And you even have the equal but opposite happen on occasion. For instance cancer sometimes spontaneously goes into remission even without any treatment, which is going to lead to a rather great outcome regardless of how inappropriate (or nonexistent) the care may have been. Had this happened to Steve Jobs, we could've seen a catastrophic social cascade begin.
Doctors are going to see those odds and outcomes play out, day in, day out.
I know HOUSE is a fictional character but I use the character as a example of a doctor I would prefer. Someone who cuts through BS, tells me straight without any bedside manor.
And as a patient, if I'm doing something stupid, say I'm an idiot. But just diagnose and treat my illness quickly and efficiently no matter how common or rare.
tldr: I like 'House' type doctors over the opposite.
> Asking for a second opinion sucks. A lot of us are preconditioned from birth to trust our clinicians.
I wonder if it's a cultural thing. I live in Poland, here we ask for second, third and sometimes more opinions in cases far more trivial then cancer. We do this before any kind of surgical procedure, painful treatment, anything that could be even unpleasant. I saved myself from a couple of root canal treatments just by consulting different dentists. We don't trust doctors at all.
It's so disheartening. I experienced a lot of friction and frowning from medical professionals when doing so. It even spills on family members because they're afraid of upsetting their current doctors will cause lower standard of care, and iirc their doctors did complain about me asking for data to get a 2nd opinion.
Doctors just have absolutely massive egos, because they suffered though a lot of staying up through the night during residency and difficult exams and whatnot and they also are king of their fiefdom now, and how dare you question their authority over life and death. Not all are like this, but many many.
My recent encounters agree with that. In most cases I wouldn't mind (sometimes it's even funny), but in case of terminal disease I would expect a tiny bit of restraint.
When opinions conflict, if the first opinion is right and the second opinion is wrong you could end up receiving an unnecessary treatment that could hurt you. So I think you need to know for sure why the first opinion is incorrect, or at least avoid accepting the second opinion blindly, because the first doctor won't be there to push back.
Of course, I know nothing is ever certain here. Still, having two opinions or more data can be valuable, but only when whoever makes the final decision can actually use that information: detecting any bias and deciding with a good balance between risks and rewards.
Yes, this is a difficult decision - if conflicting treatment advice is provided by the two doctors, how do you decide between them? It's not necessarily the case that the second doctor is correct.
Of course, if additional tests are done by the second doctor and new information is uncovered, that helps.
My ex-wife was diagnosed with thyroid cancer, and the first doctor said that urgent surgery was needed and both thyroids need to be removed.
She obtained a second opinion from a well-known oncologist, who said that only part of one thyroid needs to be removed, and it wasn't so urgent.
Because everyone wanted to believe the second doctor, that was the option she went for.
This was a very expensive doctor. Shortly after the surgery, he notified her that, in fact, the cancer had spread to both thyroids, and the other one had to urgently be removed as well. This led to double the medical bill, opening up her neck twice, and all the accompanying inconvenience of two surgeries.
It was a strange situation where an incorrect assessment by the doctor directly led to that doctor making more money.
Also, it highlights the tough decision in terms of how you decide between two conflicting opinions if there are no additional diagnostic results to assist.
There is only one thyroid ... presumably you're referring to the two lobes.
There are generally clear discriminators determining whether a lobectomy or total thyroidectomy is called for. What is missing here is the detailed discussion with the two doctors of exactly why they were recommending their course of action and what attempts were made to reach consensus. "everyone wanted to believe" is not the way to go about such things ... but there's a good chance that the evidence favored the less radical course. A lobectomy has considerably less radical consequences and so is strongly preferred if a total thyroidectomy isn't indicated. But it's not uncommon for the pathology report of the removed lobe to indicate high-risk features that call for a "completion thyroidectomy", which is what your ex-wife had. It's not some nefarious conspiracy to make more money.
Thank you for the corrections and clarifications. It does still support the point that it can be hard for a layperson to make a call on which opiniom to adopt.
With "everyone wanted to believe" I was referring to the patient and family.
It was (is) difficult to get appointments with these doctors as they are fully booked months in advance and there was no opportunity to consult with them again or get them to discuss the case with one another. Hence the decision had to be made with the information that could be remembered from the consultations. (These days I always record all doctor's consultations for future referral, as memory / recall is of course notoriously bad.)
Between November 2024 and January 2025, I visited liver surgeons at 4 different hospitals in 4 different states and got 3 different opinions on what was the correct next step for my cancer treatment.
I've had a couple of second opinions for far less serious stuff in recent years. In both cases the original doctors suggested major surgery pre-emptively, even though they were very different types of thing.
In the first case, I decided to talk to an expert in the particular area who then ordered different tests. These indicated the issue had actually gone away completely, and I avoided surgery as a result of those.
In the other, a grade 2 ACL tear, it was less clear-cut, but I felt like the explanations given by the second doctor as to why he'd recommend against surgery were clearer and made more sense to me.
I'm glad I got both second opinions and the first case in particular, made me much more likely to get second opinions in future as well as more confident about doing so.
I broke my leg at the edge of the Fibula bone. 4 Orthopedic specialists gave me 3.5 different opinions with different and conflicting recommendations for treatment.
So, unless the first two opinions are completely identical - yeah, definitely get the third. Better to go for people with slightly different specializations if relevant.
I understand that insurance is not your friend and you must advocate for yourself in the modern healthcare landscape, but if appointments take months to get to because everyone is overbooking limited oncology specialists to get their second and third opinions, at what point is this counterproductive for wider healthcare outcomes?
Particularly with cancer, when earlier treatment is better.
From the perspective of both individual patients and the system as a whole, the best long term potential lies in more accurate and widespread cancer screening. If it can be detected earlier then treatment becomes much easier and cheaper. The liquid biopsy assays available today still aren't accurate enough to recommend for everyone but they should improve. In a few decades I expect adults to be getting them every few years.
The difference is going to a national cancer center.
My late wife was treated for metastatic melanoma at MSK. Their approach is to have clinical teams and a tumor board that are assigned patients with related cancers. They are seeing many patients and there’s a warm hand off between specialists. Your radiation oncologist, medical oncologist and surgery / neuro specialists are on a team and know each other and are often familiar with the cases. In my wife’s case the community oncologist was wonderful, but he was a sole practitioner for this particular cancer.
In the second opinion scenario, they get to use that experience and caseload to look at a case with some perspective. Your community oncologist likely works on a small team and may not have the luxury of time and exposure to trials, etc.
The only people who trust clinicians are people who haven't been through the healthcare system. There's the before time and after time. It changes you. Every field has good people, bad people and mediocre people. Doctors are no different.
Anyway, I would say I actually had relatively positive experience with Thyroid cancer. I had been seeing my Endo for 10 years at that point since I had hypothyroidism. His nurse was on top of everything. Very calm and reassuring during the whole process.
But all my experiences with the healthcare system outside of that were just disappointing. I had RCVS 2 years ago and I was in the ER and the radiologist summarized the report wrong even though he has read it correctly. They were starting me on stroke protocol and giving me these drugs but I had ChatGPT read it and it was like this is wrong. It's supposed to say no significant stenosis in the neck. It actually said significant stenosis in the neck. The dr reported it immediately and the radiologist corrected it. What a shit show. No one could even give me a straight answer on if I could go back to exercising or when I can get off a medication. Every doctor I saw was completely different. Have a few other stories like that pre LLM's. But you have to advocate for yourself. And always double check the doctors with LLM's now a days.
I was with you right up until your last sentence. Absolutely get a second opinion for any diagnosis that you deem warranted, but putting your healthcare decisions in the hands of an LLM is not the route I'd be suggesting to anyone.
I read it more charitably. Double check with the LLM because it is pretty good a lot of the time and might uncover some useful insights or oversights. Don't blindly trust what it says, definitely, but use what you get from it to guide further inquiry from reputable sources.
Nah. I'm permanently jaded from an experience I had as a teenager visiting a doctor.
I don't recall the specifics, but there were symptoms of an ENT infection, nothing serious. I remember being concerned about a white lump on one of my tonsils. The doctor's diagnosis? A stuck piece of rice.
No, it was not a piece of rice. It was a tonsil stone. It happens almost every time I get sick. And I guarantee that if I shared my symptoms and a photo with AI, it would render the same conclusion.
Would it be dumb to blindly trust everything a model says? Sure. Should you trust it alone, especially for major issues? No. But having received such a stupid and brain-dead diagnosis from a supposed "professional" doctor in the past, I would never give them the automatic benefit of the doubt.
No one advocated "putting your healthcare decision in the hands of an LLM." Answer the post that was written, not the one you rewrote in your head to conform to your biases.
Current frontier LLMs are incredibly powerful diagnosticians. They will generally give you the best assessment that can be made on the basis of the information you include in the prompt. So it's important to make sure that information is accurate, and also that it's phrased well enough to allow the model to weigh the importance of each detail.
Unsurprisingly, the same tips are important when communicating with your actual doctors.
Even the great doctors make mistakes. As a patient, you know your history front to back, but doctors can forget or miss even basic details. They tend to have little time for each patient, so I understand how it happens. You have to continually pay attention, correct people and make sure to accurately describe everything you know. Be a pain in the butt, do a ton of your own research, and ask ask ask ask ask.
My mom removed her breast cancer in 2006. It never came back, no metastasis. She did however get a new separate grade 4 glial cancer this year and died within a month of the operation due to undiagnosed sepsis. She was immunocompromised and the medication she was on was hiding the signs of pneumonia. After they completely removed the brain tumor, she looked strong with only minor motor impairment, but she probably picked up the bacteria in hospital.
The lesson I took from my brother's Hodgkin Lymphoma treatment was that the quality of your local A&E/Emergency Room matters a lot. It's easy to get focused on the cancer treatment (and that is of course extremely important). But in the UK, at least, if you become seriously ill at home during your treatment you will end up in the Accident and Emergency department, not the cancer ward.
Treatment for cancers such as lymphoma unavoidably result in the immune system being basically destroyed... so patients are, at times, unbelievably vulnerable. My brother ended up in A&E several times. Sometimes it was a false alarm - just nasty but normal side-effects from the treatment. But, several times, he had caught an infection that required IV antibiotics to resolve. He ended up on PipTaz several times and Vancomycin at least once.
You would think an immunocompromised cancer patient would go to the front of the line. But this was absolutely not his experience. Even though his wife repeatedly told anybody who would listen about his situation, he was nevertheless subject to huge delays in diagnosis on multiple occasions.
And - this is the point of my post - delay in treatment for an infection on one occasion resulted in sepsis that was only diagnosed when his wife eventually persuaded a doctor from the cancer ward to come down and look at him herself.
Absent his wife's borderline aggressive/hysterical advocacy for him he would be dead.
My takeaway was that the 'best' situation, therefore, is one where your cancer hospital is a genuine specialist centre AND your local emergency department is highly rated and sees a lot of cancer patients and so knows what to look for. If the latter is not the case, you will need an extremely effective and tenacious advocate to fight on your behalf.
We were blindsided, her cancer was completely removed, but even though they suspected a metastatic cancer, histopathology determined grade 4 glial tumor, idh-1 negative, p16, GFAP positive, Ki-67 20-30%. She then developed oral thrush and had a cough, she was also feeling tired and sleepy, and had swollen ankles. Looking back, these were fairly obvious signs. But the surgeons never warned us about any of it, we attributed the swelling to dexametasone, coughing to her smoking habits, her frequent allergies and sinus problems. She was waiting for the molecular analysis of her tumor before starting treatment. Her state would at times improve completely, and her primary care physician dismissed her after seeing her throat, and the blood work was only done a few days later. By then her CRP was already through the roof. Only then was she admitted to the pulmonology department, and she never recovered, went into septic shock and died a week later. I would say that the first symptoms started maybe a few days before going to the doctor, and I suspect had we gone to the main ER in the next biggest city (where she did the operation), she would've gotten a throat swab and blood drawn at least. It's so sad, because it took only a week or two from diagnosis to her tumor being removed completely by skilled surgeons and she never got a chance to fight it. Croatian healthcare is also such that it's better to drive to the big city emergency hospital directly than to rely on your doctor or small local emergency, usually they are understaffed and just plain uninterested.
Been through this with my girlfriend who was diagnosed with TNBC in 2015. The second opinion amounted to "guys your doctor is a rock star, there's nothing here that's amiss and you are on a good path". She was cured and remains cancer-free to this day. This doctor had the confidence to say that he would cure it, and as you can imagine myself and my girlfriend were cynical but that's what actually happened. Was round about the time David Bowie died.
Something that I learned when my father was diagnosed with cancer, you can "shop" for a treatment plan. He visited various hospitals and met with doctors to hear their plan. He picked one and then used a local hospital to implement it.
Close family member of mine was wrongly diagnosed(not cancer), did not listen to the hint we had, prescribed the wrong medicament. She was in bad condition. Went to another doctor (while the first one was on vacation) - got the right test, the right medicament and recovered quickly. Her actual doctor after learning this did not apologize, but threw a tantrum and also dropped her. Probably enough legal grounds to sue, but who has time for that.
To the doctor you're getting the second opinion from, don't tell them the first opinion right off the bat until you've heard the second opinion. This to not put them in a position where they feel any pressure whatsoever to agree or disagree to the first. You want their own uninfluenced opinion. Afterwards, yes, you can tell them the first opinion, so they can give their separate opinion on that.
If the opinion is basically objective (of course can't be fully) your doctor shouldn't have any issue with getting a 2nd opinion, if it's from a real doctor. Would see it as a red flag if they really object.
Yes because everyone will want to share records / data. The specialized clinics / centers are used to this role! Especially if you are going from a more-generic to a more-specialized center, but even if you're walking down the street.
This is literally life-and-death. My recommendation is for full transparency, it was crucial for us.
> Yes because everyone will want to share records / data.
You should really try to have a copy of your own records. Different sorts of clinics may sometimes make it difficult to get a copy of studies, reports, etc. but it's something you should really insist in, to the point of avoiding places that don't give them to you. It lets you have greater selectivity of your healthcare providers by not depending on a provider for access to your own medical data. Resist the lock-in.
Also, providers may not archive your data forever. I've had one that realized my records from a visit some years earlier had been discarded/lost. They would have been really useful to make a comparison.
Having your records yourself, you won't have the need to tell them so they can ask for your records to the other provider on your behalf.
It's a good idea to tell them you came to them for a second opinion after they've already given it, so they can also give their opinion on the first opinion. However, that's different from telling them so they can get your records when you should already have them yourself.
My friend's mom recently had a brain tumor removed and it took going to 21 different doctors over several years and her pushing hard for expensive imaging work to get done before they found it.
“Check out all the resources and materials at the Sijbrandij Foundation. Sid (GitLab cofounder) took matters into his own hands when standard of care ran out. Schedule a call with these guys. They are great and have good materials and questions to ask your doctors.”
Thanks for your kind words about FCCT from the Sijbrandij Foundation. We help people look beyond the standard of care for cancer. Calling with them is a free service.
My suggestion is that if you're within a 2-3 hour drive of major cancer centers - just use the US News list https://health.usnews.com/best-hospitals/rankings/cancer - go there instead of your local community hospital. The top cancer hospitals in the world accept your health insurance (probably), so why not go there? Use your vacations days, book hotels if you have to - this is the time to go all out.
My experience: I was horribly sick for 10 months, none of my local doctors could figure it out, then I drove to Penn Medicine in Philadelphia and they did the right labwork in the first visit. These top centers just have different mindset than your community hospitals.
Sadly the teaching hospital near me is both not especially competent and essentially the only teaching hospital in the state, plus even more bureaucratic about access than the other hospitals
Once you're at that point, just go to the top of the list for whatever specialty and fly out of state, or even to a different country. US healthcare is so absurdly expensive that flights and hotels kinda have to be cheaper than the care no matter how crazy you go.
I no longer go to my local community hospital for any purpose. It’s either an inconsequential thing that my primary care doctor can deal with, or go to a large reputable hospital even if it’s a one-hour drive away.
Really good advice! There are so many benefits of the big centers, the largest one being speed. At MD Anderson I got a question answered within 20 minutes of my visit to a Dr that happened by him calling the pathologist. If that wasn't at a cancer center, it would have take days, or more likely, the question never would have been answered at all.
But you experience is not "Things to know when you get cancer"
I agree with you in spirit but once you know you diagnosis most cancer treatment isnt actually that complicated because we dont actually know how to treat cancer.
My wife was diagnosed in February with stage 4 invasive lobular breast cancer, peritoneal carcinomatosis with complete bowel obstruction. Surgeons gave her a couple weeks to live.
We went through enhertu which worked for about 3.5 months and relieved the blockage and she was able to eat again and get off IV nutrition. It obstructed again and her markers rose sharply in the summer, we did a course of taxol and are moving to trodelvy next week.
All of this has been entirely predictable, standard of care patterns.
But the standard of care for my wifes disease right now is a march toward death and I refuse to accept that.
I spend my every evening talking to every LLM, practically bargaining and begging for one of them to give me a thread of hope.
I appreciate this service and we will check it out. We are desperate to find something, I recognize ILC is tricky and complete obstruction is usually a death sentence, but we have to try right? She is 49, we have 4 kids.
Anyone out there, any ideas...any longshot, we will do anything.
Try a different approach. Cancer cells are quite immunogenic, so they're easy to kill, but their fickleness isn't what matters. It's their environment (TME: tumour micro-environment, if you want to search the literature) and their evasiveness that makes treatment hard. And maybe you can't do anything about the cells themselves, but you can certainly affect the TME.
Since you have biopsies, find the targets of the specific cell line in question, and research what you can do against them. Ignore the advice that tells you nothing is relevant because it's impossible to reach cytotoxic levels of some compound you're researching in one's system. You don't need chemo-level cytotoxicity. You're nudging the environment in the right direction, not aiming for a response the next day. Consistency wins the day. And that device reeks of scientific reductionism, and ignores things like metabolites, your microbiome, and so on. People in particular downplay the microbiome which seems to be directly involved in the immune system. You need to feed those buggers. For example, it's now established science that those without akkermansia do not respond to immunotherapies like PD-1 inhibitors. How do you get akkermansia? Ellagitannins. Walnuts, pomegranates, etc.
NF-κB is an example of a target. It seems to be involved in most, if not all TMEs. The great news is that plenty of things can downregulate NF-κB. For example, exercise (non-negotiable, the best medicine, if your wife can do any), berry anthocyanins, and even omega 3 DHA and EPA. The latter is in particular interesting because omega 3 is needed in inflammation resolution, and directly affects NF-κB. Anyway, find the appropriate targets, and do what you can do move them.
My other piece of advice is to make sure there are no deficiencies. Do the blood work. Make sure vitamin D levels are up there (they modulate the gut microbiome and immune system), omega 3 index (not free plasma, but the one that measures the actual weight taken up by cells, it's a more expensive test) aim for 8%, and so on. Sun exposure (not for the vitamin D, but also that) is also great for mitophagy. There are studies showing that cancer patients with sun exposure have better survival outcomes than those that don't get any sun.
Sorry you have to go through this. I pray that you and your wife, and everyone else involved have the strength and wisdom to get through this.
Sorry you and your family are going through this, obviously a terrible and challenging situation.
No idea what part of the world you're in, but my cousin was stage 4 skin cancer, on his way out, and his doctor managed to get him into a clinical trial at Dana Farber in Boston, MA.
Literally saved his life. Experimental immunotherapy program was the trial.
Hoping a miracle comes in your direction somehow, someway.
Sorry to hear about your wife. Keep advocating and searching.
A great resource: Cancer Patient Lab. Check them out - they might have longshot suggestions for you. Dr. Dan Flora at St. Elizabeth is an amazingly compassionate oncologist and also might have some ideas for you.
This is probably very unwelcome advice, but I would strongly recommend a spiritual practice of some kind. When things are wretched, slowing down for a moment and turning inward can help. Prayer (to whatever form makes sense) or at least Yoga (something that isn't passive) may be more helpful than meditation in these circumstances, but I appreciate this might not be right for you.
Have you checked out any international Clinical Trials? You can search a lot of these here: https://clinicaltrials.gov/ getting the filters right can be tricky though. I’d ask AI for some help looking for the right permutations of names for things.
I’d book a call with FCCT as well. They have a list of private vendors that can potentially help with genetic sequencing and a few other things. They also mentioned a service to me that helps you search for potential clinical trials.
Heard the same thing from an oncologist in Europe. Unfortunately the attitude here is still one of sarcasm. "Of course they're making great progress, but do patients agree to take part in the studies?" According to this oncologist, studies that would take 5 years in the West are done in 18 months in China, even in small regional hospitals.
Get LLMs to hillclimb your wife's treatment. The target isn't exactly verifiable but you could iterate on ways to add verification signals. There's a huge difference between asking an LLM: "hey claude, my wife has cancer, I want your help with x,y,z", which mode collapses it into extreme over-caution; versus setting up the problem like an eval, which sends LLMs into a frenzy trying to solve it no matter what.
The OP is understandably desperate for something that can save his wife. I would be too!
However, they appear to be seeking something akin to a miracle via chatting to LLMs, and the likelihood of such an approach yielding anything useful is very, very low.
Since you’ve phrased it sensitively, I’ll do the non sensitive version: suggesting LLMs to someone dealing with the trauma of cancer is kind of fucking disgusting. They need emotional support from family and friends, not a computer god.
I'll probably be downvoted for my suggestions, but here I go (I'm from France).
I would recommend changing diet, in France the "Seignalet" diet is well known.
Avoid sugar, mammal products (dairy, meat).
When you have no known solution to a problem, you have to try some out of the box solutions.
As desperate solutions, try "healers" or personally try Reiki or Zhi Neng Qi Gong or similar techniques.
Find one near your home.
Be careful: most "healers" are completely crazy (hoping to become gurus), some are money-oriented.
Most Reiki teachers are greedy.
Meat is not the problem. The problem is the standard sides and processed food people usually eat with the meat. Like burger buns, seed oils, food in frying oil .. and so on.
Eating clean proper ruminant meat will not be bad for you. What you eat with it is another issue..
Here's the experts showing that meat is heavily linked to cancer:
"The International Agency for Research on Cancer (IARC) classifies processed meat as a Group 1 carcinogen (meaning it is carcinogenic to humans), and red meat as a Group 2A carcinogen (meaning it is probably carcinogenic to humans)."
Oh dear, someone gets their health advice from streamers and podcasters rather than actual health professionals.
The seed oil thing is nonsense.
> Eating clean proper ruminant meat will not be bad for you
Eating too much beef is bad for you in a variety of ways, it's associated with high blood pressure and high cholesterol, cardiovascular disease and type 2 diabetes.
It's frickin' delicious, but it's not some panacea superfood, quite the opposite.
Oh dear, someone believes everything they read on how something is not bad for you. Tell me how seed oils isnt associated with all our health style issues?
For one, every way I eat is based on trial and error. I've read many books and studies throughout the years. I have tried a whole food vegan approach for 6 months in 2020, which was terrible for my IBS. I struggled with ibs for years until I started figuring out stuff. I come from a family that is chronic in their seed oils use, and other processed food. When I tried to cut it out from my diet completely, I had improvements in my gut, as well as my skin and migraine. I am diagnosed with idiopathic urticaria, migraine, and IBS.
Solving my issues has been my main goal since I was a 115kg heavy teenager under 165cm. I managed to lose all the extra weight, but not without all my problems mentioned. Therefore I started experimenting from 2017. The last 4 years has been amazing regarding health and diet.I mainly eat ketogenic diet, and no seed oils at all. Only carb I do eat occasionally is potato. Potato seems to not trigger anything for me.
Current weight is 86kg, and been maintaing around this for years now based on my gym schedule.
I don't care about what streamers says at all. Unless they have tried it themselves for longer than 90 days, then it is invalid in my opinion. Just assuming that my advice is based on advice from streamers and podcasters is plain stupidity. If I can create the food myself from ingridients and animals around me. Then it also means humans did for ten thousands of years prior. Seed oils did not even exist before modern times. I do not count olive oil as seed oil when I say this.
Disclaimer: I have spent hundreds on hours on reading shit like this. How much time did you spend on the topic food? Did you transform yourself from trial and error?
Not sure if I want that to be honest. I could surely be 6-7kg lighter, but I would lose strength that has taken years to build. My height is 185cm now.
> Tell me how seed oils isnt associated with all our health style issues?
Ok, smoking, air pollution, mining runoff and water table poisoning, industrial waste, low-nutrient density foods, processed foods, sugary foods, red meat, Soda, energy drinks, lack of preventative care, lack in general of practical and affordable healthcare, alcohol, I could go on with hundreds of other things. But sure, seed oils are the problem. All of these are much more harmful to society than seed oils. Sure, are they used in excess? I'll grant that, but replacing them with animal fats is awful.
Linseed oil (flaxseed oil) is high in ALA and omega-6 fats, it could cause a REDUCTION in inflammation in some cases. It has the best omega-3:omega-6 ratio I know, and plenty of others are not harmful.
It sounds like you found something that works for you, but please keep the misinformation out of this convo.
Its not misinformation if its true. I specifically called out seed oils, since cutting that will basically cut most of the things that is bad in the modern diet. Its hard to find ultra processed foods without it here in my country. Even some soda has it now.. Its obvious that there are many factors, but starting with removing seed oils and sugar will make the biggest impact since so many other options has to be removed then.
Your list is true if you remove red meat from it. Obviously no people should be smoking, drinking, using plastics around food, do some gym or other fitness daily .. and so on.
So the real story here is that seed oils are a proxy, you haven’t necessarily seen any effect from removing them from your diet (consistent with the actual evidence here) but by cutting out processed junk you’ve lost a load of weight.
Congrats on the weight loss (genuinely), but it’s very unlikely seed oils are any sort of factor in themselves.
As a preventive measure, vegetarian/vegan diets are correlated with lower incidence of some types of cancer. There's a little bit of research showing that survivors of these same types of cancer may do better afterward (as in lower likelihood of recurrence) with a plant-based diet, but it's too soon to draw any conclusions there.
But there's nothing to suggest eliminating meat can help combat cancer or increase survival rates. And good nutrition -- including and especially protein -- is critical while fighting cancer. Switching to a plant based diet usually makes this harder for people.
Don't throw around stuff like this. It's pseudoscientific, at best.
Yeah it's a phenomenal documentary to watch if your favorite hobbies include confusing correlation with causation and completely misinterpreting rat studies
We are talking about a biased documentary promoting a particular diet, not "the worlds largest study of nutrition, run by actual doctors". Yes, the documentary refers to studies like The China Study but that is an observational study that drew controversial conclusions, not some infallible piece of research. Hardly the gold standard of research. Do better.
There’s a difference between watching the documentary and reading the book, and scouring the internet for quick ways to dismiss it so you don’t have to change your lifestyle. Be better.
Your argument is that the companion book to the documentary, written by a ghostwriter who is not a doctor is not biased? Okay. I'm glad you liked your book. You should read actual research and not watch/read this biased BS
I've made plenty of lifestyle changes over the years based on actual research, the most recent of which was cutting down saturated fat which cut my LDL cholesterol by over 50% in 6 weeks. But I don't put much stock in these documentaries that are incredibly biased. Only stupid people can't see just how biased they really are. They are created just to ride the plant-based diet trend to make money, don't you see that?
Also it's funny because you know nothing about my lifestyle but you are attacking it just because I don't follow a strict plant-based diet. You are in a cult and you don't even realize it
Look into fasting, I'm seeing a growing number of people claiming success with fasting activating autophagy, give it a few 48 hour stints and see what happens.
This was six years ago, but I found it somewhat unbelievable that there was absolutely no therapeutically relevant guidance from the hospital regarding nutrition.
Treatments like hormone therapy for estrogen positive breast cancer are meant to attack the cancer's metabolic signaling mechanism. Intermittent fasting, like taking 12 hour breaks with no food every day, is something else that you can do to try and stress cancer cells.
I would have thought many, if not most, cancer patients go through periods of not eating at all or even drinking for much longer than 48 hours due to mucositis from chemotherapy.
Not only fasting, but also as little sugar as possible. That also includes sugars from carbs. Also I would stay away from everything that is ultra processed. Including seed oils.
I have heard about more success stories where people did a 180 on their diet, than those who just keep eating like they did before their diagnosis.
The boring part about this, is that if it does not work, you spent the last part of your life eating really restricted.
Had a family member recently go through unexpected major surgery.
One thing I would mention:
You are not dealing with a monolithic entity with regards to a hospital.
There are really multiple groups with oftentimes competing interests e.g.
- case manager wants you out and home b/c that is the best "score" for the hospital. They also DO NOT want you to qualify for Medicare if you are a senior b/c, again, "score" gets dinged if Medicare gets involved
- surgeons want you out as they don't want you to pick up hospital infection. They want you to go to a rehab facility as that will more likely lead to a good outcome
- the hospitalist wants you to be stable in the short term so will pump you with whatever medications are necessary to get you "back to normal" without addressing any root cause
- the nurses generally care about you as a person as they deal with you the most but oftentimes have the least amount of say over your case
- in one of those perverse incentives/unintended consequences: if you do TOO well on a physical ability test, that might disqualify you from certain coverage even if you are below the threshold on other ability tests. That can have gigantic insurance implications.
This is prompting me to write my own version of the OP blog post.
> - the hospitalist wants you to be stable in the short term so will pump you with whatever medications are necessary to get you "back to normal" without addressing any root cause
This really rings true with me after my experience having pancreatitis earlier this year. I ended up hospitalized THREE times in the span of a month. The initial hospitalization was for the pancreatitis (which became necrotizing pancreatitis, this is important). Then I was discharged after the pancreatitis pain subsided - I think at that point they had noticed that a psuedocyst had formed next to my pancreas but they didn't see it as an issue and wanted me to get it looked at outpatient.
A week later, back in the hospital, jaundiced face and eyes because it turns out the psuedocyst that 'wasn't a big issue' was compressing my bile duct, which were causing multiple issues. They did some tests, my liver enzyme tests went back to normal (briefly), they discharged me again.
Another week later and my liver enzyme tests had skyrocketed again, and I was instructed to go back to the ER again. This time we didn't take 'oh you'll be fine, deal with it outpatient' as an answer and insisted that they look deeper into it after the 2 previous hospitalizations, and they ended up being able to 'scoop out' the stuff in the psuedocyst and finally have it go away and stop causing issues
I have colon cancer. It's been a hell of a journey and my outlook is... not great. To me, this list seems practical but not profound.
It doesn't prepare you for all real stuff: you need to get ready to die. You need a plan for your trust, your estate, your funeral, and how your family will deal after.
You should have these plans in place before cancer because you could get hit by a bus. (I didn't because I'm stupid but maybe learned a few things the hard way.)
The fact that you’re commenting here tells me you have tremendous mental strength.
If I can add, for the benefit of other readers… One thing I learned is every case is different. Different cancer. Different body. Different support network. I’d suggest to anyone hit by this bus to never lose hope and keep an open mind about options (second opinions, calling in favours, moving, etc).
Wishing you all the best.
The first point is by far the most important. The US healthcare system (and probably others) is an unfeeling machine and you have to treat it that way. Ask for earlier appointments, cancellations, and referrals to other specialists. Navigate it as if nobody knows (or cares) what you're up to. Doctors tend to only exist within their silo and it's often on you to request a different type of doctor or even another one of the same type. Be a pain in the ass, your survival may depend on it.
Personal story: I was having trouble using my left arm. Like, couldn't lift or type or do much of anything with it. Was told it was a pinched nerve by physiatrists and orthopedists, despite having no pain. Only when I specifically requested for a referral to a second neurologist did he order the head MRI which exposed a brain tumor in my motor cortex. We were able to move quickly and get me on a treatment plan which has bought me a lot of time. Had I not advocated for myself, it would have probably mutated into a much worse type and killed me soon.
I had to quite literally sit in a doctor's office and make a public nuisance of myself to get a referral for a family member to a specialist for cancer when the regular doctor said it was just back pain. Then I drove the 2 hours to their office to get the appointment. It was lymphoma.
People can't ignore you as effectively if you're in their physical space. When it comes to your health or the health of your family, do not back down. Doctors are used to nuts who googled the symptoms or joined a Facebook group and have all the answers already. Make it clear you have NO answers but NEED them asap.
I've had similar experiences. It's kind of terrifying, actually, you have to walk the line of being annoying enough to get what you want but not so annoying they completely ignore you.
One of the things I've learned is to apply the Socratic method, preferably in front of their colleagues if they try to brush you off. Also, if you've got scary symptoms, demand they write down what your symptoms are on your record and why they aren't concerned, then demand a copy of all relevant records (it's your property) -- this often gets them to reevaluate your risk in terms of their career.
Worst case scenario, you can make up medical history. I had a family member pass recently from colorectal cancer. They had symptoms but their PCP kept insisting they were too young. My family member suddenly "remembered" her aunt died of CRC when she was a kid. This got her referred to a gastroenterologist, and they found out she was stage 4...after her PCP delayed her diagnosis for like a year. She actually had grounds for a malpractice suit but who's got the energy or money for that when they're fighting stage 4 cancer?
Also, know your state's agency responsible for policing health insurance. This family member's insurance company routinely tried to deny life saving procedures, but a call to the right govt agency set them in line each time.
This is something I don't understand of the US and other "developed" countries health systems.
Here in Mexico, i can get to doctoralia and make an appointment with a high specialist , like a Vascular Neurosurgeon. All by myself. The first visit will to maybe $200 usd (and that's very high) and normally it's a week away at most. No waiting on the private health option.
Of course if you go with public health, it's a disaster and a shame.
What other countries describe is the equivalent of your public health system. If you're willing to pay out of pocket, like you describe, you can have a similar experience in the US. However, that can get expensive quickly since you normally don't have just one appointment with a vascular neurosurgeon.
You would think so, but insurance has infected everything.
I often try to go cash pay, since in many cases at this point it's actually cheaper, absurdly enough, and get told that I can't even get an appointment that way. I actually got kicked off primary care at a regional (fairly large) practice because they couldn't take my insurance, would not bill out of network, didn't service uninsured people (!!), and would not take cash, credit, barter or trade.
But the thing is that paying out of pocket would be very expensive in the "developed" countries.
The advantage of the less developed countries is that you can get pretty good private medical care for a reasonably price. The quality may not match the very best care available in the rich countries, but in many cases, it is adequate.
> The advantage of the less developed countries is that you can get pretty good private medical care for a reasonably price.
What is a "reasonable price"? Relative to a rich country, the price may be low. But relative to the average income to common folks in that country it is likely just as expensive as a comparable private option is in a rich country. Apples vs. oranges.
Iow, you are describing the perspective of a rich person in a poor country. I don't think a rich person in the U.S. (top 0.1 percentile, let's say) minds the health case costs in the U.S. either.
The average white collar or knowledge worker in my 3rd world country can usually pay for mid-tier private medical care, including specialists, without any problem.
Of course the top tier private hospital and specialists can be pretty expensive, but is not that expensive to avoid the public/government health system.
For most things, I can do the same in the US. It has a lot to do with your insurance provider. E.g. UnitedHealth is pretty well known for requiring pre-authorization for every little thing. But BCBS, which is who I have had most of my adult life, is far more relaxed about it.
A lot of of specialists will _only_ take patients by referral unless you can prove you have the condition. This was my struggle. I had to wait and wait until my doctor specifically referred me to that doctor. I called before he did and they wouldn't even give me the time of day without a diagnosis.
More common specialists you can just book with. I got an appointment with a cardiologist with no fuss.
> Doctors are used to nuts who googled the symptoms
When you were there, did you have anything else to come with than the symptoms of your family member? In other words, how did you look different to the doctor than somebody who just googled their symptoms? (Or, to put it differently, without meaning disrespect, in which way were actually different from cases you referred to in the above quote?)
I used the doctor's words. I had them chart EVERYTHING and got a copy of the chart. I then highlighted the oddball items and wrote out the history of cancers in the family. I also showed that the family member had no history of back problems, no abnormal development to cause it, and hadn't done anything lifting or otherwise to cause it.
And then I sat in the nurses station until the doctor finally took time to listen. They threatened to get security, but I just kept my head and kept pointing at the things the doctor himself wrote.
I didn't try to interpret anything, I didn't do any diagnosing myself and I didn't try to act like he didn't know what he was doing. I just kept saying that it was more serious and we needed a second opinion.
I have a similar but more benign story, and cannot emphasize enough how correct this comment is. I had severe abdominal pain and vomiting. My PCP told me it was GERD and I should lose weight. Two days later I was getting an emergency cholecystectomy because my gall bladder had necrotized.
A good shorthand is that unless a doctor has positively identified something through imaging or biopsy do not trust them when they tell you what something is or what to do about it.
If you aren't sure how best to advocate for yourself, use AI to help figure out what tests and referrals to ask for. You might feel like a jerk, but don't expect anyone to care about you more than you do.
I've been daydreaming about starting a US company around the idea of being able to hire a "medical coach".
Not a doctor, and not a case worker, but someone with a deep knowledge of the American health care system and infinite patience. A trusted person to take you to and from appointments, to chat with you about how things are going, and handle paperwork.
It would be expensive, but I think it would pencil out for most working professionals who don't have the time or energy to navigate everything for themselves or for a loved one.
Been gone through something similar. It's important to be persistent.
My PET-CT was originally scheduled for 6 weeks, and they couldn't get it sooner. I had to call every imaging labs within 50-100 miles radius, eventually got one within the next couple of days.
The next important one is to find the best doctor you could afford. I didn't have a lot of faith on my local oncologist, especially when he said that my cancer (nasopharyngeal carcinoma) is rare and had not much experience with it.
I was able to get ahold of the chief surgeon at UCSF, purely by luck. Felt a lot better when he said that this type of cancer is pretty common for south-asian descent. He has dealt with it quite often due to a large concentration of asian in the bay area.
The treatment sucks, but small price to pay considering I can spend more time with my family.
NPC is not rare even among not Asian-descent people, it’s just poorly documented; I lost my brother to it in July and we don’t have anybody coming from Asia our ancestry, that we know of. The doctor did said “there are only 20 cases of this in the world” after citing a paper where the sample size was 20. He did not order genetical tests nor tests for biomarkers for modern drugs. “Standard of care” my brother got in the US is from the 80s and it was unconnected to the molecular biology of his cancer (there has been a lot of relevant research in the last 20 years), but the doctors will subject you to it before even allowing you to access the better, most modern options. In my brother’s case, the standard of care treatment put fuel into his process instead of slowing it down, and by the time immunotherapies and other options were considered, it was already too late.
One thing I noticed is that the oncologists managed my brother far more than they actually worked on his case; oncologists are often overworked and, by necessity, desensitized. They are aware of new treatments because the pharma industry takes good care of that, but they are way less willing to read scientific literature relevant to a specific type of “rare cancer” present in a “single patient”, and they actually need the two things to be effective.
I feel for you and for your family; may the stars align for you and you get to be out of your crucible with the least amount of suffering.
Thank you. So sorry to what happened with your brother.
I agree with you, NPC is not rare. I know at least 3 people on my network that have them.
I'm lucky, in a way that the stage was low (stage 2, T1N1, low-risk/low-EBV).
My entire treatment (chemo-radiation) was done in ~3 months, and my team of doctor knew well what they were doing. The side-effects of the treatment last for years unfortunately, something I have to deal with.
It's been 3 years on remission, no sign of cancer/marker anywhere. I'm grateful.
The number one thing I tell anyone who is going through any sort of medical situation that requires extensive care, you have to be the biggest advocate for your care. If youre not comfortable doing that, then find a loved one who will stand by your side and be that person. Healthcare is a business and you need to treat it with the same vigor you tackle business problems because your issue is a business problem to them.
Don’t forget, Doctors are just well read mechanics
If you've dealt with the American medical system then stories like this aren't very surprising. I'm not going to act like this is everyone's story (a lot of people have pretty smooth experiences) but it happens a lot more often than it should.
It's not unique to America. Specialists are in high demand everywhere and seeing them means you have to pass through a screen of generalists who first rule out all the common explanations for your symptoms.
But GP's point is otherwise true. It's just a job to them. They see dozens of sick people every day. There's no way to be empathetically engaged with all of them or really any of them and still be effective. It's not personal, and they aren't ignoring you. You're a bug report in their ticket system. Understand that and you'll be able to deal with the system more effectively.
If you have halfway decent insurance in the US you do not need a referral to see a specialist.
The exception to this rule is if you are in an HMO like Kaiser which force you through "level one support" (your GP) or if the specialist is so busy they require a referral to screen out the social media schizos.
This is not true, many specialists will not book you for an appointment without a referral, no matter what your insurance is. Call one up and try, some will book you but many will not. My friend was told to see a rheumatologist by an emergency room physician. The first 10 or so she called said she couldn't book an appointment without a referral from her PCP. She finally got one to see her with an ER referral rather than a PCP referral. A self-referral would have had no chance.
If you saw a concierge specialist that is cash pay only they'd probably see you no matter what though.
Yes. They don't have time to deal with hypochondriacs who just show up. Unless you are an existing patient asking for followup, or have a referral, many will not schedule you or will maybe give you an appointent six months from now.
I became close friends with a doctor over the past couple years and she's an extremely caring and diligent person. Truly wonderful went into it for the right reasons.
By all accounts is amazing to her patients, but god the amount of work thrown at a PCP and the deluge of emails and just how little life the system gives you (at least while in residency, I guess I'll see what happens after)... like I have to imagine our care could be so much better if we weren't trying to optimize the system and had more resources.
My mom is a teacher and it's similar there, she loves kids so much and after a few decades she absolutely cannot wait to be done. She was excellent at the start of her career and got kudos from absolutely everyone but now she's just getting by until retirement because she can't take it anymore.
"""There was not enough of the patient to go around, and specialists pushed forward in line with raw tempers and snapped at their colleagues in front to hurry up and give somebody else a chance. A colonel with a large forehead and horn-rimmed glasses soon arrived at a diagnosis.
“It’s meningitis,” he called out emphatically, waving the others back. “Although Lord knows there’s not the slightest reason for thinking so.”
“Then why pick meningitis?” inquired a major with a suave chuckle. “Why not, let’s say, acute nephritis?”
“Because I’m a meningitis man, that’s why, and not an acute- nephritis man,” retorted the colonel. “And I’m not going to give him up to any of you kidney birds without a struggle. I was here first.”""" - Catch 22, by Joseph Heller.
I had a heart condition (myocarditis) recently after a viral episode, despite the obvious prognosis the ER doctor treated me for a heart attack instead without consulting a cardiologist which sent me to the ICU.
I should have mistrusted the doctor and trusted the AIs more, unless they gave me compelling reasoning. Don’t give up your decisions to anyone, incompetence is abound.
It's an over generalization but think this person has a point. The US health system has it problems (cost!!), but have read that since it's money driven instead of a government service, compared to other healthcare systems, it's often got a shorter wait time to see a doctor. This makes sense, a lot of students want to become doctors in the US, because they can make a lot of money
I feel like the >(cost!!) factor can't really be overstated there. IF you have money then you can get healthcare, if you don't, then you're out of luck. It's a massive gate which needs to be passed, and if you can't pass, then you're locked out with no alternative.
That doesn't sound great to me (read: broken), because it means its not evenly accessible across your society. I wouldn't count that as a good system to be honest.
I have limited experience with the New Zealand and Japanese medical systems, and from a similarly arms-length engagement with them, I think I would prefer them over everything I've read about the US system. You still have the same issues with having to advocate for yourself, but you can at least get access to good healthcare across the board - and if you go private (which as a late 30s / early 40s guy, cost around NZ$60 / month), you can get access to care at private facilities much faster than via public.
It is most definitely imperfect, but it _is_ designed to be accessible to everyone.
In theory, Serbian public healthcare system is available to everyone, but in practice, wait times are extremely long (you might wait 6 months for an MRI for a suspected cancer by a specialist; specialists are booked a year in advance sometimes, though GPs are pretty available).
The way system (and patients) survive is by relying on "connections": someone you know gets you to "jump the line" (it could be a nurse or a doctor or even a janitor at the same hospital you want to get a specialist to see you).
It ends up being similarly "fair" (iow, not), but at the very least, everybody will prioritize kids and young adults (though in children's hospitals, same pattern is present).
Private healthcare is reasonably accessible, but best experts are with public healthecare institutions (uni clinics) or when working externally, booked 3-6 months in advance.
You read that where? What evidence do you have? In my experience, Americans are often blissfully unaware about how poor their health services are.
As someone who has seen many health services up close (from founding a health tech company and literally visiting myriad health establishments around the world, over the past few decades), the US hospitals and clinics always struck me as the most run down. But as soon as I walked in the boardroom at UHG or HCA, it suddenly all became a lot more glamorous.
And whilst the US does ok with cancer outcomes, so do other nations like Germany, Switzerland, Japan, South Korea, Singapore, Canada, and the United Kingdom.
Most advanced nations have universal healthcare with similar outcomes to the US, but for significantly less money. They also don’t leave citizens destitute for having the unmitigated gall to impose an unexpected health emergency on themselves.
The US system funnels profit, it doesn’t provide better healthcare.
I explored specializing in health econ in college. My professor put it this way - health care is a scarce good. There's only so many doctors, so much medicine, so many beds. You have to control access to the goods somehow, otherwise you have Tragedy of the Commons.
In the rest of the world, it's controlled by extended wait times. In the US, it's cost. You can have moral arguments about what's fair, but that's the economic reality.
At the time I as studying this (early 2010's), the average wait time of diagnosis to first treatment for breast cancer in the US was 12 days. In NIH, it was 5 months.
>It's worse everywhere else. There are no specialists in all of the government-run systems I've dealt with and at some point, you really have no options left.
>Canada introduced MAID for this reason.
What is it with Americans being so confidently ignorant about everything?
Canada introduced MAID because someone who wanted MAID sued the government and asserted that banning MAID violated their constitutional rights. It went all the way to the supreme court, and the (federal) government fought tooth and nail AGAINST allowing MAID.
It should be noted that the Provinces are responsible for healthcare, but it was the federal government who banned MAID prior to the 2015 supreme court case via the criminal code.
So, in short, stay in your lane. You have no idea what you're talking about.
Really interesting reading this, because I went through my partner having cancer a decade ago, in a nordic european country, and the experience is very different.
They rolled out the red carpet for us, they gave us everything, we essentially had a direct line into the oncology ward. They also gave us all the meds we needed. At one point we wanted to go to SE Asia and they gave us twice the meds we needed for an entire month so we could mail one half, and take the other half with us, with doctor's notes, as redundancy!
And no we didn't pay a dime for any of it.
But if you don't have cancer, then I agree with the first statement of the blog, you really have to act as your own project manager when it comes to health care.
I'm so glad you had this experience (genuinely). My husband and I were treated very well here in the US when he was diagnosed with cancer and I'm so grateful to the doctors, nurses, admins, and the cancer center we were treated at for that. It takes so much off the plate when you just have to focus on 1) showing up for infusions and then 2) going home to rest.
In the US, my experience is also having the red carpet rolled out for my kid. Our health insurance company has already paid $500k+ within a few months of diagnosis, and there are still a few medicines at $70k and $100k+ per dose to go through, plus ~$7k+ per night in the hospital for a few days to a couple weeks at a time.
Nurse staffing ratios are 1 nurse to 2 kids or less, we get private rooms with a bed for parents, broadband wifi, and extensive food menu to order room service from all day. We also have the email addresses of our oncologists, 24/7 phone number to oncology department, and we got opinions from 4 other cancer centers in the country to confirm treatment was appropriate (luckily there is a lot of data).
That's good health insurance, I thank the stars you had it.
But we just went with standard national insurance, and the total cost is never revealed to us so I can't even tell you what it costs on their end.
We reach a certain level of cost, it was maybe around 250 dollars at that time, after that threshold they pay everything for the rest of the year, until the threshold resets
This is fantastic. Thanks for posting it, JJ. There's a very strong chance you'll save n>0 lives by posting this.
Minor addition: When you talk to someone who has undergone the surgery, try to find someone that's a similar age and in similar shape to you, otherwise you may get wildly varying answers.
You'll respond, experience and heal from a surgery quite differently at 40 vs 50.
> AIs may downplay the seriousness of things. I was chatting with various models and most pushed me in the direction of “you don’t have cancer” for a while. Just something to note.
This is certainly another data point for "never trust AI chatbots".
Statistically, it makes sense- most people asking AI if they have cancer don't have cancer, so a model that is lacking detailed information should basically be returning based on the basal rate of cancer in the population with a threshold applied.
I think it's a truism that naive computer science people who have watched the rise of computers, the internet, and AI will always believe that curing diseases is a straightforward process and that new tech will rapidly fix all the old problems.
The folks who actually go work in the field, understand the structural problems, the costs/benefits, and the long slog to bring successful treatments to patients are skeptical. But we're still more than happy to be proved wrong- if Anthropic (more than OpenAI) is working on life sciences and drops some amazing information that transforms cancer care with massive positive results, we all win.
Do we all? Or does anyone with enough money to pay for Anthropic's IP, win? Nothing states that Anthropic/OpenAI/... have to share information they have generated. As the crunch for income becomes real, I doubt valuable things will remain free.
I don't see any scenario where showing that we can tremendously improve medical care, even if it's IP/trade secret from an AI company, isn't a win, when integrated over all the variables.
If they succeeded, you can bet everybody else will be duplicating their results within 2-3 years.
Gemini says what I think makes sense (there are multiple responses which could make sense)
[ if I gave you a picture of something on my skin could you diagnose it as a melanoma ]
No, I cannot diagnose skin conditions or identify melanoma from a photograph.
AI-based image analysis cannot replace a professional medical evaluation. Skin conditions—especially potentially serious ones like melanoma—require a physical examination, and often a dermatoscope or biopsy, by a qualified healthcare professional such as a dermatologist.
AIs often keep blabbering "ask a doctor" after every medical question and I absolutely despise this behavior.
99% of the time I'm asking the AI medical advice questions because (1) there is no specialist available on short notice (2) most specialists I actually see do not give me the sense they take things seriously enough (3) a lot of specialists are just incompetent.
They trained on reddit too hard. Everything is "Talk to a therapist, lawyer up, consult with your medical doctor". It's just used for deflection after someone gives (usually bad) advice.
Well the AI can’t order any diagnostics, so that’s good advice. And yes, specialists can be hard to schedule on short notice but if you’re in a major metro area, it may be worth trying multiple hospital systems.
Oh, it absolutely can. If it's bloodwork I can absolutely get that done through Function Health or similar platform without a doctor's order. If it's imaging I can fly to another country and get it done faster and cheaper (including flights and accommodation) than the insured price in the US.
I also give the AI access to all my medical records at 6 institutions in 2 countries over the past 15 years, and it draws upon that context. Doctors don't usually have time for that.
I meant “order” in the clinical sense: e.g. you have to involve a clinician to get more information.
An LLM might be great for summarizing that wealth of information for a doctor to consume, but it won’t compete with a doctor’s judgement or knowledge of their practice and institutional knowledge.
LLMs, even at their theoretical best, are limited to publicly recorded knowledge. If you want to know how extremely limiting this can be, look at the surgical outcome rates of surgeons by educational experience, vs outcome rates from surgeons based solely on experience. Surgeons with more experience have far better outcomes than those with any other attribute.
> it won’t compete with a doctor’s judgement or knowledge of their practice and institutional knowledge.
I vehemently disagree, based on the number of times doctors have misdiagnosed me, and AI or other internet searches have yielded a correct diagnosis and treatment.
It won't compete with the top 5% of doctors, but most of the time you are not going to get to see a top-5% doctor.
Doctors can have any of: good judgment, high experience, poor judgment, or low experience.
Having a doctor does not guarantee good judgement or good experience. But an LLM is guaranteed to have neither judgement nor experience.
Get a second opinion, or a third. Don’t get zero opinions.
And most of the time, you don’t need a 5% doctor, you need to find the one with the correct background of experience. Every misdiagnosis I’ve ever had was because I was at the wrong specialist. If you don’t think you’re getting the right care, sure, ask your LLM for alternatives. Then go speak to specialists in those fields.
> Or should it say it can't be sure and to ask a doctor?
It's an extremely slippery slope to having it say that about even the most basic medical information.
If you don't believe me, try any google search related to something as simple as hangover tips. The AI summary will tell you to call SAMHSA and then brutally stonewall you on anything else even tangential to alcohol.
I can't reproduce your claim. I get a medically correct response from the AI summary and then a link to the Mayo clinic at the top of the search results.
Disagree. You don't take the evaluation at face value. You still push back and explore every thread. You don't abandon your own logical reasoning.
But you definitely want to scour the entire search space for solutions.
And the most efficient means for that is LLMs.
It's my experience that doctors are compartmentalized in their thinking, limited in their time, and definitely will not be extensively exploring your case.
E.g., I had 30 years of resistant hypertension. Multiple medications. Saw many cardiologists. Nephrologists. I was told to "just lose weight." BP was erratic over the years. ER visits. It was awful.
I googled. Pheochromocytoma. Hyperaldosteronism. Asked the cardiologist, "Could it be this?"
"NAAAAH, just lose weight."
But I insisted on a referral to an endocrinologist. And when I suggested it to them, given my extensive history, they were basically like, "Oh yes, we'll get you tested. I'm surprised you haven't been tested before?"
I had a left adrenalectomy 6 months later. BP has been controlled ever since.
Yeah I did not mean that as a indication to not trust AI. But rather to use it as a companion and pressure test things doctors say with AI and things AI say with doctors.
This is the opposite of the experience people have when googling symptoms, though, where you often find articles suggesting that you’ve got some very serious condition when you do not. Interesting that the human bias when reading WebMD type articles is the opposite of the bias of LLMs.
That's not universal. I work in genetics, and we did an investigation a few months back, by asking various AIs whether a particular mutation causes $DISEASE. Invariably they were very strongly biased towards saying yes, even for completely obviously benign variants. I think that's because the majority of the literature out there describing variants is describing pathogenic ones, because why would you write an article about a benign variant, so the only material it has ingested is articles describing variants as pathogenic. In reality, the average person has millions of variants, and almost all of them are completely benign, so there should be a very strong pre-supposition that a given variant is benign unless there is fairly strong evidence saying otherwise.
You were asking about individual mutations, like SNPs or small indels?
Very few diseases are caused by individual mutations like that (typically only monogenic Mendelian). Individual mutations typically cause an increased propensity, or severity, rather than being the sole or root cause of a disease.
I work with monogenic diseases, where a single mutation (or a pair in the same gene for recessive conditions) does cause disease. There's a lot of them. Your statement isn't true for these.
You're talking about polygenic traits. That's a different ball game entirely.
True! However, don't both biases point to "don't (primarily) decide by googling or asking an LLM"? You'll either be extremely scared or extremely reassured.
Honestly it's horrifying how many people are happy to chat away with a bot about every medical condition they have. AI isn't your doctor and isn't bound by HIPAA. It's not a great idea to hand out such extremely sensitive information that can be sold to anyone willing to pay for it, or end up leaked, or stolen. I mean, depending on the diagnosis, they might not be around long enough to suffer the consequences, but people who plan on living for a while should give more thought about the impacts that could have on the rest of their life.
As a fellow cancer-haver, I would give a piece of proactive advice for those (in the US) who do NOT have cancer or even suspect they have it:
Find a decent primary care doc who is not impossible to schedule with. Someday, if you do have a problem, the primary care doc will be able to send you off for scans, etc. much more easily when you are an existing patient. Getting appointments as an existing patient is much easier.
It also helps that your history with the doctor will help you build trust. If you have the same doctor for years and you only went twice for symptoms (that was treated by specialists), then your doctor might redirect you to a specialist in no time as soon as you have any new symptoms.
Just like many of us in the US grew up with shop class (where you learn to build and repair things) and home ec (where you learn to save money by doing things yourself), we should have classes in middle school on how to work within the medical system.
It took me decades (and a ton of advice from my wife) to understand how medical systems work and to get the results I want. Having a good relationship with your PCP is invaluable.
Hi! Bayli here from Future of Cancer Care Today (the foundation on the last bullet point). We’re a team of scientists who provide education, not medical advice, to cancer patients.
Anyone can book a call for free to discuss potential diagnostics and therapeutics in and outside the standard of care.
The late Jake Seliger and his widow Bess blogged at length about their experience navigating the medical system after his squamous cell cancer diagnosis. That was in 2023-25 though.
His articles forever changed how I view terminal diseases and my stance on how to manage them.
If I ever get such a disease, I have it in writing with my family that I will not seek any treatment after the first recommendation, I will not do experimental treatments and I will not prolong a life of suffering. Rather go out under my own terms.
I'm forever grateful to Jake for writing his experiences in such detail and candidness.
While I would never pass judgment on anyone who does not want to seek excruciatingly painful treatment, I am grateful for all those who do and add to the data that allows medicine to progress and increase quality of life for those in the future.
It is only by giving people too much and too little chemotherapy that humans figured out the dosages and regimens that optimize survival and minimize relapse rates.
I think about it a lot when I see kids in the pediatric cancer ward, and what decision I would make for myself, versus the decision to subject a child to very painful treatments to kill the cancer. And how mine only has a good prognosis because so many others went through hell, and didn’t survive.
This article is very relevant to me. Just this last Sunday I watched my mother die of melanoma.
My big takeaway from the whole ordeal is that you need to take a very active role in your own treatment. Unfortunately I was only able to become actively involved in managing my mother's treatment in the last few weeks. What I saw was a clear pattern of (what I'd regard as) negligence. There were so many missed opportunities to provide the care she needed. I came to the sad realisation that if you're not cracking the whip, many doctors will take the path of least resistance, and that in many cases, the only way to get documentation or help as a relative is to be ready to kick up a stink in-person.
Summarizing what the doctors said is fine, but please do not rely on LLMs for medical advice. As someone here helpfully pointed out, bringing someone along and having them take notes will do wonders for followup questions and research down the road, but please use existing sources. LLMs can explain a diagnoses, but cannot reliably CHOOSE a course of action. Doctors make mistakes, but they also are legally liable, through malpractice and certifications, for their medical opinions and treatment. LLMs are not.
There are many good resources out there that will not gloss over important details, and have experience (hard-earned) behind them.
Best of luck to the author and everyone dealing with it, stay strong!
FWIW, I have successfully addressed a few personal health issues in collaboration with AI: soft plaque reversal as quantified via CIMT testing, and bringing my slightly elevated blood pressure into normal bounds
And I'm making significant progress in optimizing my health. It's not without its flaws, but I find it's a great interface into the broad field of medical research, and better than any doctor I've known at integrating a broad set of medical data from disparate sources.
Plan to go to Houston, TX is my only advice. Houston has the MD Anderson Cancer Center. It is the highest rated cancer center in the world, if I'm not mistaken. They also do the highest number of cancer-related clinical trials. MD Anderson is also in the Texas Medical Center, which is one of the most well-concentrated hospital networks in the world. People from all over the world fly here for cancer care.
If Texas isn't for you, Memorial Sloan-Kettering Cancer Center in NYC is the next best bet AFAIK.
> You may need to push for comprehensive genetic testing. Some doctors were weird about this and didn’t order it promptly, even after telling me they would.
Honest question - when physicians steer their patients, do they have any specific instructions or obligations with regard to who and what they are optimizing for?
For example, if you visit any online space where (self-reported) physicians are sharing their opinions on any of the newer self-paid testing services (e.g., Function Health blood testing, Prenuvo MRI scans) you'll clearly see some of their internal calculus around why these services are good or bad. The thing that I've been surprised by in the past is that the "impact to the system" often comes up as a reason not to use these services. Yes you the paying consumer might learn something about yourself, but it's a bad idea on the premise that you might be crowding out someone who needs the care more than you do.
I can respect that point of view, but if that is part of what informs a physician's recommendation, it should be clear and explicit. Is this something that any code of ethics covers? Optimizing for the patient in front of you first and foremost?
My problem with Prenuvo is not the screening aspect; it’s that Prenuvo is poor value. For the cost you pay out of pocket, I can find you conventional imaging centers that will charge the same (or less!) for fully diagnostic images and a fully diagnostic report. And they will give you the images on disk (or a link to a portal) right there.
If you want to be screened and have the cash to pay for it, go right ahead! Knowledge (can be) power! With the caveat that imaging is step 1 and you may need further work up. Don’t go to the Theranos of imaging; go some place truly diagnostic.
It drives me crazy how many doctors are against elective screenings. When has having more data ever been a bad thing?
Agree that Prenuvo are crazy expensive compared to Mirovita (
https://mirovita.com) and others who offer the exact same service for significantly less.
There’s this idea that a false positive means screening is not working; it’s part of why health systems argue against screening at all.
See fights over: mammography, serum PSA, Lung cancer screening, colonoscopy, etc.
I wouldn’t say most frontline doctors are personally against screening, but they hate fighting with insurance companies over this stuff, and would rather not deal with it.
This goes for any medical expense, but also beware of the "Coordination of Benefits (COB) Questionnaire" required by your insurance company. They want to confirm your other coverage (e.g. Medicare) once a year, and sometimes the only way you know they are expecting it is when you get a call from your doctor's office that your claims are being silently denied. The insurance company won't send you an email, a call, or a ding in the portal, the language is buried at the bottom of a page of one of those PDFs you have to explicitly download.
I've had luck with just calling once a week or sending nastygrams asking why my claims are still denied, they usually say "oh that didn't go through I'll manually process that" and approve a few more each time. Incompetence vs maliciousness etc.
Looking at financial reports of the major health insurance stocks in the US makes me wonder if they are really "incompetence".
Take United HealthCare (UNH) for example, they reported $112.7 billion and net income of $4.11 billion in Q3/2026. That's great amount of revenue and profits to have enough resources to not stay "incompetence". It's not a coincidence.
Is there adverse selection in reports of the callousness, incompetence and greed of US healthcare providers?
Three years ago, of necessity I became a big-time consumer of healthcare[1] and I can't believe I just been lucky that nearly all my doctors seemed reasonable and effectively treated me. Of the dozen or so doctors I dealt with only one left me with a bad feeling.
[1] Stage 4 renal cancer, successfully treated with immunotherapy and surgery at Perlmutter Cancer Center in NYC.
There is definitely some, but the #1 advice is excellent advice pretty much wherever you go IMO. Beyond just scheduling: You absolutely have to be your own advocate for all sorts of stuff that will otherwise often get dropped through the cracks.
It’s been six years since my mother passed away from pancreatic cancer. I was 17 at the time. Fortunately, my parents had already thought of and done almost everything suggested here.
One tip I don’t see on this list: if you have cancer, always bring someone with you to medical appointments. They can ask questions, take notes, and support you emotionally. It’s hard to take everything in when all you can think about is the fact that you have cancer.
> new folder on my Mac, and after appointments I’d dictate what happened and what the doctor said
I cannot recommend this enough, including writing down almost every day about symptoms and progress. I didn't have cancer, something else, but it was very valuable to be able to go back and see exactly how long time a symptom has been present and when it disappeared.
Doctors also seem to react well to being able to be precise in descriptions of what happened when.
A doctor is supposed to do an anamnesis each time it might have some consequences. This is not because they are stupid, or thing you are. People simply have error rates. Just because he wants to hear everything again from the beginning, does not mean he hasn't read your file. He want's to make sure, nothing got lost or forgotten including by the patient himself. And he is actually supposed to do so, if he doesn't that's bad practice.
> Doctors also seem to react well to being able to be precise in descriptions of what happened when.
They do. In my experience they're usually pleasantly surprised when you have dates and timelines rather than "oh I don't know, about a year ago?"
That being said the reaction differs if you offer a self diagnosis (assisted by google or chatgpt) rather than just symptoms. There will not be pleasantness. It's a toss up between a dismissive "yeah maybe" and "uh uh, did google tell you this?" Many doctors will 100% listen and consider what you say, but in my long life I've learned that offering a self diagnosis must be done very tactfully.
On one hand it's understandable, us as programmers don't enjoy having a nocoder arrive with "yeah so chatgpt says this is no good" and having to explain to them why they're wrong. On the other hand modern patients do their own research before consulting, so it's worth at least considering what's being said.
I usually listen to what doctors have to say, and trust their judgment. Especially since I have next to no formal education in bio or medicine.
I did resort to "self-diagnosis" once, though: for R-CPD (no-burp syndrome). Most doctors simply don't know this condition exists. I brought it up with my GP (whose referral I needed to see a specialist in Ontario), prepared for some pushback, but was pleasantly surprised that he did some brief research and then helped me forward.
Then again, I may have been lucky. I still hear stories of doctors who are less than cooperative when patients bring them "self-diagnoses", even for something as open-and-shut as R-CPD. But if most of those "diagnoses" are BS, then I can empathize with the docs, too.
I usually just try to give them a detailed picture of my symptoms, as far as I can, and listen to them. When it seems like they are getting ready to wrap up, I simply bring up my concerns, if they have not been addressed. The attitude should be one of seeking their reassurance that they have adequately considered more serous possibilities.
It does not always work, but a lot of doctors in my experience take some time to kindly explain why they think the other possibilities I'm concerned about are unlikely, and sometimes my questions actually prompt them to add some additional investigations.
This is exactly correct- you have to sort of pretend to be passive and let them come to conclusions first, then sort of question it logically.
One bad side effect of coming in with your own self-diagnosis is sometimes they will index on that and stop considering other possibilities they would have suggested if you hadn't primed them with a diagnosis.
Record the conversation and have it transcribed by your a.i of choice. I found a.i does a better job of distinguishing voices and assigning names "Doctor" "Patient" to the conversation and so on. Never asked about this and I use it to potentially save my life so ready to (not) die on this hill. I use Gemini Notebook and stuff the sources with all my history, all my test results and links to articles, YouTube videos anything that looks of use. Get Gemini to produce a precis of where you're at and make comments and recommendations at each stage. Producing graphs and graphics can make things stand out. You need to make sure you know your condition and results so you can check for accuracy. This approach saved me from the default treatment options and has prompted oncologists to consider others that might not have come to mind otherwise.
Yep! It’s pretty simple. Just dates, events, records with some loose links between them. Charting for the kids’ growth, and our blood test results and prescriptions, vaccines, and so on. It’s primarily hooked up to our personal agent over LAN so we just say X and Y happened.
And I pull records from my chart etc using the data export periodically and use an importer.
If I’m being honest, it’s more that it scratches my itch to document than that it is useful.
You can do whatevvr you want with the audio files - have them transcribe them, summarize them, hand them to an agent, upload them to your cloud, whatever.
The standby and talk time is really great on both the pins and the credit card sized versions.
I have a lot of friends that now use them with elderly parents/their own medical care when they need to really be able to have something automatically record/transcribe the visits.
Is there a completely local option for something like this? I love the idea, but I don't love having yet another middleman in between everything I say and the model provider of my choice.
Local-first Plaud Note Pro recording vault, transcription, and Markdown workspace. Which sounds like what you want.
2. the Plaud SDK will let you pull from the device and send it wherever you want without touching their servers.
3. You can also use the mobile app, disable cloud sync, and export each audio file as mp3/wav to your phone/tablet/whatever if you don't want to use #1 or #2.
You can have it upload to your private cloud without doing any of these, but it still transits their servers first i believe, which it sounds like you are trying to avoid
In the USA, providers are openly hostile to being recorded. You had better ask at the front desk if you can record anything first. They will tell you no.
If you covertly record, then they have every right to refuse you service and eject you from the exam room.
Do not ever record anything independently with your provider. They are absolutely hostile to this and there is no getting around it.
They will tell you that it is a violation of HIPAA. It is actually a violation of CYA.
Providers do not appreciate having any independent record of one-on-ones that they cannot repudiate themselves. If they didn't document it, it didn't happen. Don't record providers.
This is done all the time, and is quite common, particularly when care is shared between multiple people or people are elderly
16% of all appointments are recorded by patients, and the number is increasing all the time. It's up like 20-30% year over year. Only 3% of those recorded are done covertly.
Basically all medical associations have issued guidance on this and the guidance is not "kick people out of the office"
I have never once had a provider become hostile or care.
Nor has anyone I know.
People record with phones, dial people in, etc.
This is across like 10+ states, tons of conditions, ages, and hundreds of people.
While you may have had a different experience, i dont' think i would go with "don't ever do this". It's happening in almost 1 in 5 appointments, and increasing all the time.
My state, Arizona, is a "one-party recording" state. I don't need to notify or inform anyone else that I am recording, because I am the one party.
I have interacted over the phone with two major clinic systems who have busied out my line and hung up on me, just because I activated Call Recording on my Pixel.
You try it. Telephone your clinic/hospital and activate Call Recording, and see if they will still even stay on the line with you. Notify the human who answers, and see what happens.
This was not merely a human decision; it was the clinics' automated system countermeasures vs. recording a simple, normal phone call.
I was also reprimanded for recording at my psychiatrist's clinic. Then they posted signs that said that all recording, photos and videos are strictly prohibited.
When I asked at an independent Urgent Care facility, the front desk flatly refused. She insisted it was a HIPAA violation. It is not.
My dad died of cancer last year, and I miss him so much. I tried to maximize the time I had with him because I know from the beginning it would be very limited. Once he was diagnosed with cancer it had already progressed quite a bit, it had metastasized but the primary tumour was not found anymore.
He was treated by a good treatment center and four about a year and a half he still could do a lot that he enjoyed and there were ups. But the last month was very intense and his condition worsend dramatically. It is so sad to think about.
Care for your loved one and spend time with them. Don't skip medial appointments and get checked regularly. Learn doing self assessments and do them regularly.
My only submission will be to consider India, which is fast becoming a hub for medical tourism. You can get any test you want and meet specialists in hours, not even days.
And worse for post op ward experience. No family to bring food? You won't be happy. And, according to my Chinese expat friends, even seeking recommendations from friends can incur the expectation of a payoff or several. Want that specialist? Pay to get referral from your gp.
If this is maligning the system I'd love to know. They said faced with excess costs to go private in Oz for a condition or fly home and get treated in China, they'd stay here. The net cost might well be similar.
As someone who's dealt with cancer in the family, and also my own chronic illness - if you can, bring someone along to take notes during office visits. It frees you up to pay attention to the doctor and ask questions, and it keeps staff on their toes.
When my mother got surgery for breast cancer, she underwent chemo and radiation. Then begun complaining about very sharp pain in her right side ribs. The surgeon decided to remove the gallbladder. Then the pain got worse, she was sent to psychiatric evaluation, which was clean. The whole thing took a year. Finally, they did a scintigraphy: turns out she had a tumour on her dorsal vertebrae that had collapse and fused 2 vertebrae. She went on to live a couple more years until 2017 when she finally died from a mixture of cachexia and opioid poisoning (low kidney function coupled with a morphine injection at the hospital), cancer already had spread from the breast to the spine, and liver. Before all this, when the cancer was presumably only in the spine, she was offered a experimental treatment with radioactive strontium at the Champalimaud center. Unfortunately, we didn't had enough money at the time. I'm pretty sure things would have been very different now, but I would say to anyone with cancer: get a PET scan if you have strange "psychological" symptoms after having had cancer in the past
It seems getting cancer is a lot of work. If I ever get it, I would like to have a gamified app that tells me what I have to do.
-'call this number of hospital x to schedule an appointment with Dr y'. (check. Appointment in 5 weeks. Automatically reschedules the task every day to ask if there is cancelation to make it sooner).
- 'you will get your 1st opinion today. In the appointment, get your test results so we can get a 2nd opinion later.'
The app would have built in ai who knows and references 'the standard of care', and knows where to schedule each treatment anywhere in the world.
Some notes from my father's experience over 10 years:
1) Doctors are human and make mistakes or overlook things all the time, so you yourself are ultimately responsible for double checking every result and lab test, following up with questions and getting second opinions when something doesn't add up or make sense. It can be as silly as a radiologist looking for changes between 2 identical images vs comparing with the previous scan.
2) Rare presentations happen. Just because some symptoms are a low probability occurrence, they still happen to somebody, so don't let anything be dismissed due to odds without further analysis or imaging.
3) Palliative care can have a major impact on the quality of life when there's nothing else to do. Nurses were more helpful for figuring out what to ask for than doctors.
> You may need to push for comprehensive genetic testing.
Not cancer, but after over twenty years of anti-depressants of all shapes and sizes my latest psychiatrist recommended one of genetic tests and it turns out I’m missing some enzyme that is supposedly needed for the meds to work.
Bitter sweet to find these things out so late in life, but better late than never.
Genetic tests for cancer are a different kind of genetic test. They test the tumor itself for mutations that are present only in the tumor, not in the rest of the body.
BRCA is one risk factor for certain cancers. You can get genetic counseling to understand your cancer risk looking at this and other markers.
In this context, though, we're talking about measuring the actual cancer (including the tumor's mutations) to determine what therapies it is likely to be responsive to.
I don't think anybody in this thread moved to talking about tumor sequencing.
I'm just responding to:
"""Genetic tests for cancer are a different kind of genetic test. They test the tumor itself for mutations that are present only in the tumor, not in the rest of the body."""
Strictly speaking, BRCA is a genetic test for cancer (even if it's only a "risk factor"), and it's done on the regular genome, not on the cancer.
> You may need to push for comprehensive genetic testing. Some doctors were weird about this and didn’t order it promptly, even after telling me they would. My surgeon, who told me he’d get it done, eventually referred me out to an oncologist. This caused a multi-month delay to getting genetic results, since the first results were done on the surgery tumor, not the biopsy tumor.
The quote further upthread lost the last bit, which is pretty clearly talking about tumor sequencing.
> Strictly speaking, BRCA is a genetic test for cancer (even if it's only a "risk factor"), and it's done on the regular genome, not on the cancer.
Yes... that's why I clarified that I believed we/the article were talking about tumor testing and not BRCA (which is mentioned in the second link I gave).
Indeed, there are some cancers with a hereditary predisposition. But they are quite rare and such genetic counseling is usually only indicated when there is a family history of the disease.
For the vast majority of cancer patients, generic testing means somatic testing for tumor markers.
I had that gene test. Some of the results were like "don't take this because you metabolize it too fast". If your doctor is struggling with finding an anti-depressant that works for you, then I'd recommend the gene test.
+1 on getting second opinions at major cancer centers. My father was diagnosed with cancer this year and although we're doing most of the standard stuff locally (chemo) we're traveling to the city (UT Southwestern) for the major stuff. The initial local oncologist didn't specialize in that form of cancer and it was so clear how much the cancer center's doctors (who focus in a specific area of cancer) were knowledgeable about what to do. Some additional tests were able to find other areas of spread that the original doctor dismissed as unnecessary.
We asked a couple MD friends and their first suggestions was to actually get a second opinion at Anderson (Houston) but it wasn't logistically feasible.
Solid advice. On the point about surgery, seems obvious but surgeons are inclined to operate. They aren't inclined to tell you the surgery is unnecessary. They always say it's routine and they've done it many times before. All true but surgery can be very tough on your body as I saw with my late father. Complications happen more than anyone will admit.
> I started a new folder on my Mac, and after appointments I’d dictate what happened and what the doctor said and have the AI make a new document summarizing things and asking its own follow-up questions for next time. Nice to be able to refer to this over time.
This is good advice for pretty much everything actually. It could be summarized in "write things down". Even if you don’t feed that to an AI, it’s always good to keep a record.
My partner died of a very rare and aggressive cancer at 32 last year.
Apart from all the technical stuff, my suggestion is to still enjoy the time you have and treat the others as you as nice as you can, and to still keep the good vibes and jokes going. A smile can help more than you think.
We all have limited time on Earth, and at any point in our lives we should be happy with the life we lived so far and ok with the idea that we might die at any point, so if we should always be happy with what we did and have no regrets.
What people surprisingly rarely understand about cancer, is that it's rarely a one-time thing. You don't really "cure" cancer. It's really a battle, often a lifetime one, that takes a high toll on the person but also on the people around. Hopefully new technology can drastically ease this battle, and I think it already did quite well.
It's really important to have a good support system, and also not rely on just one or two people for help that might get burned out if the battle lasts years. It takes a village to heal and support someone with cancer, and having this support makes the journey so much more manageable.
I didn't want the message to come by as pessimistic, and I am sure you will win your battle, I still think living every day knowing that tomorrow we might die is the best way to live life. Not in terms of doing reckless things, but anything that we really want to do or achieve, we should either work towards it today, or be content if it might never happen.
Good to see this showing up. One thing that's not on the list that I've found helpful: writing about it. Journalling effectively. My aunt said I should and it has helped others understand what I'm going through and it's helping me process it. I'm not through my journey yet. I hope to be
Yes to this. I had a thyroid nodule which I saw many doctors and had multiple tests on. At each step of the process I conferred with AI, and each time it assured me not to be concerned, it's not cancer, etc. The doctors were less certain. It turned out to be cancer. I'm OK today! But something to keep in mind.
Record keeping is a good idea for any medical thing.
Quite a lot of serious medical things start out seeming not serious, including a lot of cancers. Basically once an ailment seems unusual, like “hmm this is not going away like usual,” start writing down every time, date, and detail you can remember back to when it started. Then keep that current.
Doing this will help the accuracy of your treatment.
There are also a bunch of implicit “timers” in standards of care, like take OTC drugs and rest for a week, then come back if it is still not resolved. Having a detailed precise timeline documented can help skip through those. The doctor may be able to look at the detail and say “ok you’ve already tried the easy fixes, let’s dig deeper.”
Yes and in fact, this is where the future of healthcare really should start.
If we healthcare customers realized that our data is really the future of medicine, and we had a way to give each individual their own records (like some encrypted block chain or something) that they can hand out access to their healthcare professionals to (instead of the other way round), we could get a lot further in detection diagnosis and treatment
Things that helped me the most are a camping spice shaker, a long flat hdmi cable, and a roll of painters tape.
The spice shaker had like 6 spices, and really helped the hospital food. The cable and tape helped me plug in my laptop and switch without having to get up during chemo which was kind of painful.
My father-in-law has pancreatic cancer (diagnosed in May 2026) very scary stuff. Living in Chicago-land there are plenty of cancer centers capable of helping with the situation at hand, however, even he considered MD Anderson as an option for treatment. Hope you are well and F--- cancer.
Always get a second or third opinion even if you have no doubt in your current provider.
Absolutely go to MD Anderson if you can. Just their staff dedicated to navigating insurance p2p BS to deny coverage for procedures and scans more than justifies the effort and distance. Someone close to me would be dead without them getting a CT scan cleared that signaled oligometastatic recurrence after 3.5 years that would have bloomed by the time they would have otherwise authorized it (9 months later).
Honestly, respectfully disagree. And I say this as having lost a sibling to leukemia being treated at MD Anderson and their quality of treatment and care was a lot worse than the previous institution they were being treated at.
Anecdotal of course but left an extremely bad taste in my mouth.
Curious where they were being treated previously. The general heuristic is to go to the places with the cases. And it's a big enough institution that mistakes will be made in hiring just like any big tech company.
A friend's insurance didn't have MD Anderson in network and he ended up at Memorial Hermann, the staff of which flips back and forth between there and MD Anderson like Bing and Google used to because they overlap physically in the Texas medical district. The difference in his words was that MD Anderson was on top of everything and managed the entire experience while he had to rely on his background as a small business owner to manage his treatment himself at Memorial Hermann.
Our friend group went through the support-mode version of this this year and much of the advice rings true.
To add, a giant shared document that the group of friends had access to in order to take notes. Findings, theories, doctor statements will be shared when the patient isn't in a great place to be taking notes.
And for anyone reading this that might have someone facing cancer in their lives, go make a nuisance of yourself being present - feel empowered to spend a bit more time than you might initially think is necessary/helpful with them. Facing this stuff alone is when it is at its hardest.
I was hospitalised (not cancer) and completely zoinked out of my mind due to sleep deprivation, constant blood loss and being in pain 24/7. People did visit, but I guess they just thought... I have things under control? I wish they had talked to the doctors and asked more questions. In the end I came out of it fine, but I probably would have gotten a better result with someone advocating for me.
Please go and be a nuisance. As someone with a clear head you will likely be able to understand the topic better, from a more neutral standpoint, and potentially push for the best possible treatment.
> If surgery is recommended, I would try and talk to someone who has undergone the surgery. I did not do this and regret it.
This applies to all surgery.
The medical system uses coarse statistics, like "did the condition go away" and "did the patient survive".
"The patient went through a devastatingly painful 9 months and slowly recovered over the course of years to work towards a small improvement in the original symptom" may be classified as a success.
And don't forget that many actors in the system are financially incentivized to recommend interventions.
just lost my mom in law with a multi year battle with cancer. she was very proactive with her health as this article describes.
it's also important to remember that modern medicine, as wonderful as it is, is still limited. your particular type may have x lines of treatment, the cancer eventually mutates, your body can't handle the latter / harsher treatments, and...that's it.
Definitely get the second opinion, examine all the options, find the open minded doctor, potentially try an experimental treatment. That's all good. But there's a certain piece you or anyone can't control, and it's worth sitting with that too. That no matter what you might do, you might still end up at the end much sooner than you want to. My MIL's 5 year prognosis was awful, and she passed between 3 & 4 years.
But there's a CHANCE you might not and you might beat it, or at least live longer than expected. And even if you don't, you will pass knowing you did everything you reasonably could given the state of medicine today. Both of those are worth fighting for.
And make sure you have somebody around that will pay attention to changes in symptoms. My MIL almost died earlier this year because everyone thought her declining symptoms were the cancer. Turns out it was just too much calcium, once they treated she got a few extra months. She likely would've lived longer had they all caught it earlier.
> You need to be doggedly persistent on scheduling things
I had testicular cancer 2017, and this is my main takeaway. You have to sell your disease to the doctor. I had a lump deep within my teaticle and was ignored by two doctors. The third one finally ordered an ultrasound. From there it was quick — I live in Sweden, high taxes but we cure people of cancer for around $100.
Cancer sucks and leaves you paranoid after. Most recently I thought I had a tumour in my mouth, and even got the AI reluctantly agree with me. Proved to be a condition called mandibular tori that somewhere along the line of 40% of population has (but the little AI failed to mention lol).
In case you wonder, yes, I only have one testicle, and yes they removed my boy-producing testicle; I’ve had two wonderful smol girls since.
This is so grim. Why is this a list of things you need to worry about?
I had testicular cancer a decade ago (in Ireland). I found a lump, went to my GP, had a scan 2 days later, and surgery 12 later. Followed by chemo and a RPNLD as was needed.
I didn’t need to chase any doctors, I trusted every doctor I met (had I had AI then I wouldn’t have wasted time with them).
I got a second opinion, because why not, but they agreed with my onc.
Is this some very US coded list that isn’t relevant to my experiences in Ireland?
ps. I’m not sure why genetic testing is suggested here?
> I had testicular cancer a decade ago (in Ireland). I found a lump, went to my GP, had a scan 2 days later, and surgery 12 later. Followed by chemo and a RPNLD as was needed.
I would be shocked if it did not go pretty much exactly the same in the US. Testicular cancer diagnosis is really well understood and straightforward.
I agree somewhat in that it's probably a "simpler" type but I would not necessarily be shocked if it didn't go that way for someone else in the US. I had testicular cancer slightly earlier than GP. Had surgery in the same week in a local hospital I originally went in after noticing a lump. Was lucky, just did the removal of my left testicle, the lymph node relomval, and regular checkups/scans - but never any chemo.
The moral of my personal story in this context is probably somewhere near the intersection of "not all cancers are the same", "you can always find an anecdote which suggests something", and "luck is a factor in life".
If I were to go through it again I'd still probably get a second opinion and go to a better place even if it was a straightforward type though because why not if it's covered the same in the end.
I'm glad your cancer was taken care of and you're healthy now.
Note to everyone reading your comment:
This is a typical psychological response, a deep need to trust the given system you're in, especially when it comes to serious medical issues.
This will lead to suboptimal outcomes and/or severely harm you in most circumstances. The people in these systems are just people, they make mistakes, they have their own personal issues, they have their own interests. The people who designed these systems are just people as well, they make mistakes, the systems are flawed, the system itself has its own interests and logic.
You need to be your own advocate, do your own research, not take what people say or do as gospel.
And yes genetic testing is extremely valuable in modern cancer care, a good oncologist will do this immediately.
> I’m not sure why genetic testing is suggested here?
I think the first genes identified that had an influence on cancer prevalence were breast cancer genes BRCA1 & BRCA2. These genes also have an influence on men getting prostate cancer.
> I’m not sure why genetic testing is suggested here?
A couple of reasons (off the top of my head). Depending on the type of cancer, there are certain genetic markers that indicate how it might progress + impact the overall risk. This is something you might want to communicate to other biological family members. Your genetics also can impact what treatments you respond the best to, and knowing ahead of time lets you start on the things that are most effective for your body in particular.
sure to ruffle some feathers with this comment but from my eyes this is just American culture and I see similar things play out everywhere.
It's a very extreme form of individualism in combination with capitalism. Then we have the worship of corporations
The best way to operate under that is how you should expect everyone else to: strongly advocate for yourself, because even hospitals in cases like this will be looking after themselves first
> You need to be doggedly persistent on scheduling things. Yes this means lots of phone calls. If you get an appointment a few weeks out, call back a few days later and ask for something sooner and see if they have any cancellations.
> No one cares more about your case than you, so take control and send lots of follow-ups.
Although the advice regards cancer, there is no time-sensitive ailment for which you shouldn't do this.
Never wait around - call, hustle, be polite, and (don't let on but) always assume absolute incompetence at every step (best to be pleasantly surprised when things are handled well, than waste weeks/months because of an administrative screw up or because your case fell between the cracks).
One to add on here (which goes to going to a top tier hospital in the field) is you want doctors that are perform this procedure / surgery / diagnosis multiple times a day / week, not once every few months or years. most of the medical medicine is definitely a field where consistent exposure / practice makes a huge difference. (and yes there is a caveat that to a hammer everything looks like a nail).
In 2021/2022, I did Google Drive, so I could see it on my phone and other machines.
If this happened now (knock wood) it would be a private GH repo with every test, every image, every receipt, every appointment, every note. Then skills to ingest/OCR/normalize them all into a common format of MD. Point a Claude Code project at it, and fuzzy search it with open questions like "why did Dr. Smith say this" etc.
The second opinion advice is gold and something we should always do when the stakes are high.
Not a doctor, that said: beside the surgical operations and medicines, one thing I'd consider adding is the ketogenic diet. Research medical studies and emerging evidence, pro/cons on the internet and seriously consider switching to it.
Depending on your conditions a state of kethosis might prove demanding to your body, but even staying very near to it might probably prove useful.
Tangentially related, has anyone done comprehensive labs on their own (via Function or others), or even genetic screening like Galleri, and had that prompt you to get something looked at? I've never been impressed by my annual physicals and how few biomarkers they check, but don't want to go overkill and find out I have a million things I could treat.
1. Find patient organizations/support groups for your cancer. They often have excellent collections of info, from some of the sources covered in the article, and can help with finding the right doctor, or the right place to get a second opinion, or financial assistance. Some also list recruiting clinical trials.
2. Try and find local support groups. Other patients are often going to give you way better ideas and suggestions that you never thought of. It also helps enormously to have other folks going through similar journeys to talk to.
3. If you can afford it, Sloan Kettering does a remote consultation, where your primary oncologist can also be present, and they review all tests, suggest new ones, go over the treatment plan, etc. They do this in some
international markets too. Pricey AF, but worth it for complex cases.
We've built an app to help people with exactly this, it's called Advoca
You can plan appointment notes with trusted resources, record and summarise the appointment and follow up with any questions or research you have after. You can also journal which automatically extracts structured information on all your symptoms, side effects, medications etc.
> No one cares more about your case than you, so take control and send lots of follow-ups.
Healthcare systems everywhere are overwhelmed, and inflicting unnecessary hurdles just to get rid of/delay people, who don't 'fight for their right'. You have to put in the effort, the system will not (even if it would save money in aggregate by moving issues from expensive urgent care to cheap prevention).
The general "don't wait" line through much of this advice is recognisable as a trait I apply at work when I want to make sure things get done. "Fail fast, discover unknowns early," etc.
I can't imagine how important it is to practice this when you deal with a terminal illness that grows over time. And how easy it might be to forget this, because you're exhausted.
Cancer, the third leading cause of death, is two diseases: a curable one, even with some disabilities, where everyone is happy and a deadly one, where even the doctors turn their back and care less. If you are lucky, the health care system is with you, if not you are on your own and the clock is ticking backwards. The official therapy for the second case is paliative care but it involves a wide variety of measures.
are there companies or services to help you manage all of this and advocate for you / educate you on the process? It seems like it's such a burden and there's so much conflicting information that having a guide/aid through it all would be really helpful. Especially in America where the system is very Byzantine.
Based on multiple experiences in family, including my dad, I say: if treatment works, ask explicitly where your cancer type is likely to spread to, and be very mindful of changes in those areas.
If so, let the docs know what you had and that it typically spreads to the area you're now experiencing a change in, if they're not already considering it.
My old man is going through the exact same thing (squamous cell carcinoma, back of the tongue), kinda weird to see this on HN of all places. He did chemorad treatment and it appeared to get it all, but then they found another localized area they want to cut out. All of this has been very invasive physically and mentally, even for finding it "early."
I suggested getting a second opinion from MD Anderson, KU, etc., on the surgery but I ultimately couldn't contend with the sense of urgency to get this thing started and rolling. It's going to be another rough year.
I find it surprising that people have to be told about getting a second opinion. In India, second, third, fourth opinions are common. I guess that is because the doctor consultations anywhere are mostly available same day if the doctor is present.
Like the author says, here we absolutely have to take everything in our hands but I am really thankful for the resources shared.
There are a number of startups (and some that already got aqui-hired) working on the problem of "how do i connect with a medical provider who specializes (or at least has seen before) what i have/think i have?" what I've taken away from this is the medical industry is a lot more fragmented than engineers would prefer. It's been a while since I checked but there seem to be at least 30+ startups at least past the series A stage of "fixing" this problem.
One I’d add, from unfortunate experience: don’t procrastinate, even out of fear.
If you think something’s wrong, get it diagnosed asap. Everything depends on cancer type, but with some, a few months in either direction can be the difference between no chemo at all and months of chemo. Biting that bullet earlier can drastically improve what’s going to be a terrible experience.
We just went through this with my father. He was diagnosed 8 weeks ago with stage 4 liver cancer with an unknown primary cancer. Multiple scans came back clear and couldn't find the primary, including lung and colon scans. I used Claude to collect his details and being a builder in his 60's it called out peritoneal mesothelioma which I flagged with his doctors. The biopsy came back the day after he died. Peritoneal Mesothelioma verified by three doctors, exposure to asbestos.
One of my aunt is detected for lung cancer couple of months ago. Its been hard navigating what options we have. How does this system work? Does anyone have a journey/experience with it?
Have had terrible pain and muscle clenching in my body since I was a teen (am 52 now) and for the past 15+ years, have been intensely working with the medical system to figure out the cause (have gotten a lot of great relief!). Agree with everything said in this blog in working with the medical system. To put my spin on it:
- You are the least-constrained team member in your healthcare: At an appointment, your doctors only get to spend ~30 min on your problem and it's unrealistic to expect them to be as deeply involved as you are on your healthcare. Yeah, you yourself can spend days or even weeks researching you health problems and planning your healthcare.
- Research your health problems: you don't need to be an expert to read about your health problem, learn the basic anatomy involved and the high and mid-level details of the surgery or treatment. You'll have to look up a lot of terms, but it's not that bad and the articles aren't that difficult to understand at a high-level.
- You are also the manager of your healthcare: Planning and seeing the big picture is critical. You can optimize a lot of the planning of appointments, exams and surgeries buy thoughtful planning. And, you can definitely catch a lot of opportunties and mistakes in decisions that are made. Just like in a tech project, a couple of good random ideas can lead you to some fantastic outcomes.
There are many more, but yeah, working with the healthcare system is an skill that can be studied and learned. Really useful.
1) Very old injuries, almost all when I was a child or teen playing sports or doing reckless things, which caused neuralgia (nerve pain). Two were on the head (one from skiing, one from playing baseball and getting hit with a bat on the head by accident). Another on the tailbone that am focusing on now
2) Very bad posture related to these injuries - had horrible posture as a teen, and thinking back, this is very probably due to my tailbone pain. It caused a ton of pain when sitting and also caused me to twist up my pelvis and hips to avoid it. This terrible twisting on top of the other pain destroyed my posture and clenched up my neck, and for the past 30 years, have been trying to undo those postural problems and muscle clenching. Have done a lot of physical therapy and exercises, but it's much better now (although, it's still a work in progress and will probably never be finished).
Personal family story about non-health side-effects of cancer:
40 years ago, Dad got colon cancer. He was a Jehovah Witness, they prohibit blood transfusions. He looked hard for a doctor who was willing to do surgery without blood, and found one. Surgery was successful, he was completely cured. Years later, the official medical recommendation for when to do blood transfusions dropped to use blood in less cases, which shows better outcomes. This was interpreted in his mind as "JWs saved my life, I owe my life to this cult", so he became a radical JW, which destroyed our family.
I was diagnosed with stage 3D melanoma in May 2026 at 39.
I relate and understand this better than I wish I did. I watched my mom fight so hard, going through chemotherapy, but eventually succumbing to Ovarian cancer in 2011.
It’s a heavy burden, even as few families are unharmed by cancer.
Personally what I find burdening is the access, and cycling through immunotherapies and targeted therapies. PET/MRI screenings often. Recently had a lesion punched from my primary forearm site’s scar-bed requiring three sutures.
AIM at melanoma, an Apple Watch, Apple Health, Claude, Google Calendar, Granola, NCCN, and Outcomes4U, have been incredibly helpful.
Fuck cancer. Never stop fighting.
I have a GoFundMe, but I’m unsure if it’s permissible.
Thank you for this. The timing could not be more perfect; my husband was just diagnosed with prostate cancer last week and we have the first meeting with his urologist in less than an hour.
We've all heard someone say "if only we had caught it sooner".
The stats are pretty staggering. Cancer has a 80% survival rate IF you catch it at stage 1. By the time you get to stage 4 your odds drop to 20%. Despite everyone agreeing that early detection is the key, most doctors will discourage preventative screenings because of fear of "causing anxiety" because of the high false positive rate. You're supposed to just wait until you start pissing blood or something.
But you know what's worse than a little anxiety? Getting cancer and not finding out in time.
The best thing you can do is go sign up for a preventative screening with someone like Prenuvo or Mirovita. The price for elective MRIs has fallen drastically over the last few years. I just checked and right now can get a full body MRI with Mirovita for less than a thousand bucks.
I can't think of a better investment for your health and peace of mind.
A few comments based on having gone through prostate cancer as well as observing how others deal with it (or don't).
As much as you need the health care system to make decisions and act, you need to do the same. And there are some kinds of cancer where talking about it is embarrassing, or fear of treatment keeps the patient from proceeding - not the doctor.
Prostate cancer detection for example has it's basic roots in the PSA test (easy enough), but also DRE (Digital Rectal Exam). As things go for exams, it's not many people's favorites and some will put it off.
Next up, say you have higher PSA. You probably will get sent off for a biopsy. Guess where they have to go to get core samples? There are a few routes, but none of them are what one might call fun at all.
So just to get diagnosed, you're going to find people who will put it off or not do it simply because they have anxiety or otherwise are uncomfortable about it.
Then there's the outcomes of the treatments - of which there are many types of treatments. The two big negatives of treatment can be incontinence and erectile dysfunction. That and your penis might be shorter post surgery if you go that route.
What that does is get people who need treatment going from doctor to doctor to find the one that tells them what they want to hear (no side effects). It's paralysis by analysis combined with fear of the not necessarily guaranteed side effects.
But there is one side effect if you do nothing for long enough - you'll die.
So do something - don't let the blocker to treatment be you.
Before getting an actual prostate biopsy you should get an MRI. This is common outside the USA, I had to ask for this before my biopsy. The biopsy itself carries a somewhat high risk of serious infection which is why a MRI first is more prudent. MRI can rule out cancer or be used for a targeted biopsy if it says you might. Targeted biopsies are much more effective at catching the cancer verses the random poking method without the mri. If you end up testing positive you also get a PET/CT scan to find other traces of PSA in you body to see if the cancer has spread.
Not that the finger test is not used so much anymore because it’s very poor at detecting cancer for much of the prostate.
I went thru all this a year ago and the MRI was 95% certain I had cancer! Turns out the biopsy showed I didn’t have cancer but another benign condition that was a rare complication of a immunotherapy treatment for bladder cancer that I did have…which is a different story.
Here's a big thing I learned from my cancer: Be very careful comparing the results of scans from different hospitals. I had one PET scan done at MD Anderson and one done at Providence St Patrick in Missoula and the later one seemed to show a substantial growth in my tumor, so I brought it up with my oncologist, who, to her credit, was very quick about scheduling both scans to be read by the same person... and the tumor had shrunk. I got concerned over nothing. You get all these nice reports and maybe even images on your MyChart page and you can do a lot of research yourself and you're still not an expert.
On the subject of research: The standard of care changes over time for a reason. Older studies, based on older treatment protocols, will have worse survival rates, and including them in an average will make things seem worse than they are. It's hard to do an apples-to-apples comparison with chemotherapy protocols from before current biologics like monoclonal antibodies existed.
> AIs may downplay the seriousness of things. I was chatting with various models and most pushed me in the direction of “you don’t have cancer” for a while. Just something to note.
I wonder if this is a deliberate prompting to counteract the old WebMD flaw of "Flulike symptoms? You have a week to live" because it takes actual context to understand that a lot of things have flulike symptoms, but for most people, most of the time, in the absence of other evidence, they're caused by the flu.
> You may need to push for comprehensive genetic testing. Some doctors were weird about this and didn’t order it promptly, even after telling me they would. My surgeon, who told me he’d get it done, eventually referred me out to an oncologist. This caused a multi-month delay to getting genetic results, since the first results were done on the surgery tumor, not the biopsy tumor. No one cares more about your case than you, so take control and send lots of follow-ups.
Also, genetic testing is not necessarily going to reveal anything. I had cancer, I got genetic testing, I explicitly opted for the "expanded" version which I was warned might give me results that sounded scary but were inconclusive based on current knowledge and... I got a Variant of Unknown Concern on one gene and that was it. Nobody knows what causes the kind of cancer I had (PMBCL) and the test left us none the wiser.
The documentary Forks Over Knives has a segment about people with cancer given days or weeks to live and they follow a whole food vegan diet and live for much, much longer. The documentary was enough for me to instantly give up meat then, a few years later, go full vegan.
I’ve known a few people who were diagnosed with cancer since then and gave them the recommendation but, alarmingly, they weren’t open to giving up meat at all. Horrible chemo and drugs? Ok. No steak? No.
Visited the MD Anderson cancer hospital in Houston with one friend and was hoping their food court had vegan or whole food options. Nope. Only pre-packaged junk food for me. It’s surreal watching people serve up processed meat and red meat to people battling cancer inside the worlds premiere cancer hospital. I feel like I’m in the twilight zone. I could go full nihilist and say that preventing cancer, or combatting it with cheap food found at every supermarket, would put them out of business. Something to think on.
Edit: totally forgot the scene when we first rolled up, with nurses, doctors and staff outside the hospital smoking and vaping. They work at a cancer hospital. What is happening?
One of the most annoying things we cancer patients go through is when well-meaning people advise us to pursue miracle cures, diets and treatments. Please don't do that. To make an analogy, imagine if you were grieving at a funeral and someone came up to you and told that it's gonna be alright because they recently watched a documentary about necromancy on Netflix.
A few things I learned being the hospital for half of this year (this is mostly specific to the US):
- If insurance refuses to cover something, check your insurance site for something called an explanation of benefits for that charge, which should give a clear reason why it was denied. Sometimes though (way more often than it should be) the reason is completely wrong, or vague, or nonexistent, or is just hard to understand, in which case call the insurance and harass them daily until they either pay for it or give you a sane explanation.
- If you go through all of that and they still won't pay, get in contact with whoever made the charge (hospital, lab, doctor, etc), and tell them that your insurance refused to cover it, and that you need to negotiate the price down. This works sometimes. Even when it doesn't work, they can usually get you on some sort of payment plan so that your checking account doesn't go immediately dry.
- In general, get used to spending all your time on the phone calling insurance and doctors trying to get people to take you seriously. This is problematic obviously because you're SICK so generally you're not exactly in a state where you can do that. If you have any friends or family, see if you can enlist them to call people for you. Also, if you can get access to a social worker, sometimes they will be able to help you with calling insurance places and that kind of stuff. If you're inpatient, just ask your nurse for a social worker - at all the hospitals I was in, they had social workers on call for stuff like that.
- Write down on your phone somewhere a bullet list of all of your symptoms, treatments, diagnosis (or attempted diagnoses), etc. You will constantly (and I mean CONSTANTLY) have doctors entering your room who have not even GLANCED at your chart, who have absolutely no idea what's going on, and who will seemingly make all of their decisions based on your answer to the question "so what's going on". So make sure you have a good answer to that, which makes it clear to them that you have a serious problem that is worth taking seriously.
- Adding to that, push each new doctor that comes in for an actual PLAN. Your doctors likely WILL NOT communicate and plan with each other -- treat yourself as the project manager. You are the go-between for everybody. If the neurologist says something, then next time you see the oncologist, make sure they know that the neurologist said that. It is unfortunately your responsibility to lead the team of doctors that cares for you, at least in my experience at a few different hospitals.
- If you have pain, don't be afraid to ask for pain meds, because unless you ask for them, they won't be given to you. Even if you're writhing and moaning in pain, you will either be ignored or given extra-strength tylenol. You have to constantly advocate for yourself and be persistent about getting actual pain medication. Even when they do give you opiates, they will try to give you the smallest possible oral dose unless you specifically tell them "I need this much of this kind, and I need it IV, otherwise it doesn't help enough".
- This includes learning how to use the 0-10 pain scale. If you're like me, your instinct will be to always undershoot your pain number, because yes this is excruciating but I'm sure people who've had full body chemical burns feel far worse than this, so maybe in the grand scheme of things what I'm feeling is just a 5 -- don't do that. The 0-10 pain scale, in practice, is actually a metric of "how much do I need pain medication right now". In my experience, anything from 0-5, even if it really hurts, will not get you real pain medication. 6-7 is like "wow this hurts, it would be nice to get something for the pain", and 8+ is "this is excruciating, I need pain medication right now".
Anyways, good article and I agree with everything there, especially the part about going to a major cancer center instead of your local hospital whenever possible. Just wanted to add some more thoughts from my own experience.
Also, on the subject of insurance, know what special programs your insurance may have for things like transplants, including autologous transplants like stem cell therapy and CAR T-cell therapy. I got CAR T-cell therapy paid at 100% due to Cigna's Lifesource program, which also paid for transportation and an apartment stay.
> You may need to push for comprehensive genetic testing.
> This caused a multi-month delay to getting genetic results, since the first results were done on the surgery tumor, not the biopsy tumor.
I am confused. What does "comprehensive genetic testing" mean here?
Note: I understand perfectly fine the idea of testing. I fail to see why this is required here.
For instance, the blog author differs between surgery tumor
and biopsy tumor. However had, a tumor is a clone, by definition;
see Henrietta Lacks cells (https://en.wikipedia.org/wiki/Henrietta_Lacks).
I do not understand his distinction here. I don't think the distinction
makes any logical sense either.
> Use AI to help you figure out what to pick based on your case.
I fail to see the point here either.
> The rest of the HN comments are worth reading too.
I am not sure about that either.
I understand the issue of cancer being different, and some
can kill people quickly (Henrietta did not reach an old
age), but I had small benign tumors removed surgically
(fibroma of the fatty underskin). No extra treatment was
necessary after that (this happened about 15 years ago or
so). I understand that benign tumors are very different
from metastasizing cancers; my point is more that I don't
really agree with the statements made there in general.
I think that surgery is a perfectly fine way for many
cancers/tumors. It also is potentially very risky and
can come in with huge problems. In my case, though,
chopping off the small fibromas was the right choice.
Unfortunately cancer will hat many people, also differently,
so one may never be secure: https://www.cancer.org/cancer/risk-prevention/understanding-...
Risk of getting any type of cancer may be up to 40%;
dying may be in between 13-17%, higher for older people.
So I am not at all suggesting cancer is harmless at all,
but at the same time I would not use that recipe listed
on the author's blog entry either. I think the best
qualitative assessment I could do is to say "it depends";
and to not rely on AI either. IMO most people should
read up on things for a while, does not have to take long,
say a week or two of slow, concentrated reading in a
non-emotional but objective manner. Then you may understand
a lot more. Cancer biology is, for the most part, actually
cytology/cell biology. (The cancer chapter in the book
molecular biology of the cell is also good; I think even
non-scientists will understand most of that via slow
reading too. Why does everyone want to succumb to AI here?
I don't understand it.)
The hardest part of cancer is you never really know anything. You’re not sure whether you have the disease, whether the treatments are working , whether you’re clear of the disease. You can’t even be sure that your diagnosis is accurate. There are few deterministic diagnostics . You can start an entire multi-year course of therapies costing a half million dollars, taking decades off of your life, and never know whether it was necessary or helpful in the first place.
Coming to peace with that uncertainty is the only way you can survive it.
And the guys advice to get a second opinion is a false confidence. The diagnostics are primitive and low signal, and they all share the same NCCN guidelines for therapies. Peace of mind has value, but you’re not going to receive any revelations.
Also many treatments will hasten your death than the disease itself. There is another HN thread posted today: "Do dentists know what they're doing?", the comments are illuminating. Same goes for oncologists - money incentives play a major role.
Because cancer is "just" some error in what a cell does, and the detection didn't work. Giving enough time everything will have cancer. It's simply memory/hardware faults accumulating.
Also many treatments will hasten your death than the disease itself. There is another HN thread posted today: "Do dentists know what they're doing?", the comments are illuminating. Same goes for oncologists - money incentives play a major role.
> AIs may downplay the seriousness of things. I was chatting with various models and most pushed me in the direction of “you don’t have cancer” for a while. Just something to note
In the past, misguided research on the internet would often yield the exact opposite. The most innocuous set of symptoms? Oh you have a super rare disease that is found in SE Asia (you lived mostly in suburban America. No travel). Or, you have cancer or lupus.
Sure, there are bad apples in medicine just like there are in tech. But knowing many doctors personally, reading this fills me with equal parts frustration at your cynicism and sadness for what they endure.
What's the difference for a physician today vs. 30 years ago? Among other things, today's physicians struggle because they're being crushed: continuously squeezed by the financialization of their hospital/practice, carrying larger debt, more time spent fighting the insurance machine just to get basic treatments approved. On top of all of that, they are less respected in general and often face outright hostility from patients... all while being paid relatively less than their predecessors.
This can all be true yet people fighting for their lives often feel like they're getting ignored, dismissed, or treated like livestock by their doctors. It's hard to see your doctor as the victim when it's you or somebody you love bearing the cost of their shortcomings.
To your point, it's hard to imagine any human dealing with the conditions a lot of doctors face then showing up the way we want them to all day, every day. But how much suffering are patients supposed to absorb to subsidize the stress budget of their doctors?
I wouldn't go as far as drawing an analogy here, but it reminds me of debates surrounding police violence in high stress situations. Is there a higher standard when you're accountable for other peoples' lives? Are you off the hook or is it on you, and not the people you serve, to fight systemic and situational problems that make it hard for you to do your job well?
I'm not here to dismiss critiques, concerns, or fair observations. An inefficient, overfinancialized system is brutalizing all players. But to make such a comment about doctors "at large"? Everyone's experience is their own, but it's just perpetuating a state that I find wrong, (ironically?) unempathetic, and overall dismaying.
Many of these things apply to health conditions in general, and some of it's advice specialists themselves gave me. "Do not trust a general practitioner to have the apptitude to manage your multitude of conditions, you hear people say you practice being a doctor using google? You absolutely should.
After what i've been through, I think it's good advice for everyone.
Source: Just a number of issues that ultimately led to outcomes being worse than they could have been otherwise:
"You're too young for cancer (at 25)."
Had cancer in my bowels. Caught very early as I kept pushing and pushing (heh, pushing).
"Your body hurts and you're having problems working because you're stressed from work"
Reality, incomplete spinal cord injury from severe cervical myelopathy. A wrong movement, fall etc could have seen me in a wheelchair at basically any moment. As it is I live with life long side effects I may not have needed too, had someone done the needful earlier.
I just had my 11th year in remission after 2 stem cell transplants. The best advice I can give is you need to be your own advocate, ask questions about everything, clinical trials, what treatment looks like if initial treatment isn't enough. Let me know if I can be of any help or if you have any questions.
> AIs may downplay the seriousness of things. I was chatting with various models and most pushed me in the direction of “you don’t have cancer” for a while. Just something to note.
Hey, could you share one of these chats with the "Share chat" function? This might be of interest to a lot of law students.
Just by being posted here on hn, it will probably be discoverable by anyone that searches for cases where an LLM gave damaging medical advice.
Chatgpt seems pretty comfortable triaging without any legal waivers or disclaimers about not being a doctor. That said it's possible it did so for OP, I don't know
"You can find the “Standard of Care” flow charts for every cancer type. "
This is good advice for any non simple medical problem. Because while you may not have the book knowledge and definitely not the clinical experience you probably can tell when your care is deviating from standard care.
When my wife got stage 3 cancer, the doctors initially made the decision that she would get standard chemo, but I had done a lot of LLM-assisted research the weekend before and we had essentially come up with a full decision tree in our heads so we knew that if test results show A, then we want option X, otherwise if B and C, we want option Y otherwise if B but not C, we want option Z... And so when the doctor told us the test results, we understood straight away that my wife had the rarer form of cancer which didn't respond well to chemo and responded well to immunotherapy. So it was a shock when the doctor suggested that she would be put on standard chemo-radiation therapy. Immunotherapy wasn't even mentioned in the conversation. We pushed back and asked for immunotherapy to be considered. We had to wait one additional week for the decision, but they essentially agreed with this course of action. We got lucky because the class of drug we needed was only just made available on the public health system in my country 1 month prior at the discretion of the doctor. Also, very glad we switched to a private oncologist (everything prior had been done in the public health system). So far, it seems to have been a good decision because they did a test just 1 month into treatment and the tumor had shrunk by almost 50%. I struggle to imagine how different our lives would be if we hadn't pushed back.
Her cancer was the exact same kind, down to every detail as the one which was tested in one of the most successful cancer trials in history; 100% success rate of full recovery with no surgery. Also, her specific genetic profile was an exact match for about half of participants in that trial. Essentially she was a textbook perfect candidate for immunotherapy so it's mind-boggling that it wasn't the first recommended option.
have you tried PNC-27 peptide? Another option is focused ultrasound (HIFU) that I would look into before going the traditional route, which might kill you quicker than the cancer itself.
The audience on this site is highly privileged. But even someone with the moderate privilege of simply living in the US you’d be better off accumulating massive debt to get that treatment. Worst case scenario with the debt is you simply file chapter 7.
Absolutely. It’s also very good advice. I live in Austin, TX. I know multiple people who have gone to MD Anderson in Houston. It’s a way better quality of care, and my insurance is just as happy to pay for them or local docs.
My mom was diagnosed with stage 1 cancer in 2006 in Idaho. I was a PhD student at MIT at the time and a friend in lab helped me get an appointment at Dana-Farber. I thought it was probably overkill (it was a common cancer) but we did it anyway. They said everything in Idaho was standard of care but suggested one extra test, which Idaho team then reluctantly did, which revealed distant metastasis (stage 4! ), dramatically changing her treatment trajectory. She lived another 15 years (I miss you Mom).
Asking for a second opinion sucks. A lot of us are preconditioned from birth to trust our clinicians. But you're going on a journey and your life (or the life of your loved one) is on the line. Insurance often covers it. Your doctor will NOT be offended.
Think of it this way : if you were deploying code to the mars rover, and your colleague asked to do a code review before you pushed go, would you be offended? This is even more important than that.
They were complete no-ops and a waste of time. Faced with that same situation today I would simply lie about whether or not a treatment plan was put into place.
Second bit of advice is to try as best you can to go into clinical trials with an understanding of the landscape of disqualifying treatments. Any immunotherapy treatment, for example, will disqualify you from nearly all subsequent clinical trials for immunotherapy.
Lastly the thing I would recommend for partners of loved ones in the crucible, don't get too distracted by trying to 'save the patient' that you miss opportunities stay connected with them in the process. It's not your responsibility to save their life, as much as it might feel that way when you're in the thick of it.
While using this information for comparing clinical trials is fine, I want to emphasize that it would be phenomenally short-sighted to skip first-line approved immunotherapy in order to preserve the option for some random trial later on.
I'm not sure if you're actually suggesting this, but immunotherapies are some of the best cancer therapeutics that exist, so skipping approved drugs for future experiments is just a bad idea.
In our case it was a clinical trial that the oncologist was aware of and we got in. I'd obviously heard of clinical trials but that was my introduction to the machinery by which they operate.
Most studies that which reach stage 3 will not be approved, and that's because they're found to to be unhelpful or even harmful. So the most likely scenario is you do nothing or even hurt yourself by seeking out clinical studies, all of which will be optimistically framed as promising and potentially revolutionary. This can be particularly dangerous if you're opting into a trial in lieu of the standard treatment, as opposed to in addition to such.
I would just say that ‘dangerous’ is relative and when the standard of care leaves effectively no hope, your tolerance for risk can change. Yes this does increase that chance of shortsighted decisions or manipulation. That just comes with the territory, I’m still very appreciative that we have the option to elect to participate in the peocess.
As GP noted, most drugs don't work. To make it a bit more specific, even in phase 3, the failure rate for cancer drugs is something like 50%. And that's typically for some non-survival endpoint (assuming you even get the treatment, which is itself a coin flip).
Clinical trials are noble, admirable things to do, but too many people think of them as treatments, when they really are not. They're an experiment that you do with your body when you reach the end of the road and there are no more options.
It always makes me a little sad to hear how patients talk about trials and fight to get into them, as if being in the trial is somehow progress. Expectations are not being managed properly.
And? What is the point of this observation? Of course they are unlikely to do anything. Your other option is to do nothing and die. Nothing wrong with that if that's what people choose to do...'accept their fate' and all that. I'm not opposed to it at all, there's a certain appeal to it.
But when your wife and the mother of your two beautiful daughters is laying helpless on nature's altar you fucking move dude. You don't do nothing.
> Your other option is to do nothing and die
I really don’t want to be this blunt, but I don’t know how to say it any other way: death is not an option. When you’re at the stage of clinical trials for cancer therapies, it is the inevitable outcome. Otherwise, you wouldn’t be in the trial. Maybe it extends the inevitable, maybe it doesn’t. The odds lean heavily toward the latter. And there’s also always a cost.
I’ve lost friends and family to cancer too, and watching people you love torture themselves with ineffective (or even minimally effective) treatments is agonizing.
When it comes to clinical trials, you need to start with the cold, hard reality that you’re doing an altruistic experiment with the remaining portion of your life. There are lot of people who don’t understand that, and see trials as some kind of back-door to better treatment.
The probability that I think you're talking about here is not actually relevant, given that the trial is already underway. Basically, the "potential advance" event has already happened. (Similarly, the probability of getting shot by an arrow is not relevant once the arrow's already poking out of your body.)
Given the trial is already underway, the probability that matters is the fraction of treatment candidates at the phase you are considering that make it all the way through; for phase 3 trials, this is 58-65% [0], which is actually pretty good. Of course, rates for earlier phases are much worse because there's attrition at each phase.
0: https://patentpc.com/blog/clinical-trial-success-rates-how-m...
[1] - https://academic.oup.com/biostatistics/article/20/2/273/4817...
[2] - https://pmc.ncbi.nlm.nih.gov/articles/PMC10660249/
Prompt engineering!
Sadly, you learn that honesty is not the best choice always. And an honest answer is best given without too many priors.
I fully encourage any patient who wants another opinion to get one. Definitely really good advice to seek one out before you start on your treatment plan, if it can be done without undue delay. I think of planning cancer treatment like lining up to take off for a flight: some plans even if imperfect are more dangerous to alter than continue if they've already been put in motion. There are--rarely, thankfully--times where we don't end up concurring at all in the diagnosis or treatment, and this is all best sorted out before the first treatment.
But a second opinion isn't a waste just because it agrees with the initial plan. In my experience, that's actually the most common outcome, and I think it's a really good thing if a second opinion can give deserved reassurance that your original team is doing everything by the book. For many common cancers, there's consensus as to the most appropriate first-line treatment because there's peer-reviewed evidence and agreement on how to apply that evidence. When all of it points towards an effective treatment, down to a standardized dose and schedule, and it's a really good thing!
There's some subtlety that arises when there isn't a clear consensus as to which of (say) two reasonable approaches used by different comprehensive cancer centers is best. If you look at guidelines, both of those approaches would be listed as appropriate, but patients might be recommended one plan at center A and a different one at center B.
What it can come down to is that center A delivering treatment A demonstrates comparable results to center B delivering treatment B. In that scenario, if a patient lives down the street from center A and travels hundreds of miles to see me for a second opinion at center B, I would almost always agree with getting treatment A at center A. Not because I'm trying to manage what center A would think of me, but because I'd truly believe it's in that specific patient's best interest. First, all else being equal, I'd have no grounds to think that traveling hundreds of miles to get treatment B at center B would be better than staying local. Second, in general, I'd strongly doubt that getting treatment B at center A (which wouldn't be the plan they'd have the most experience with) would be superior to getting treatment A at center A.
And, yes, I absolutely have recommended when appropriate for patients to transfer care to our center, and I have also recommended when appropriate for patients to leave our center to go elsewhere (for example, for a particularly promising clinical trial option). I've seen every one of my colleagues do the same without hesitation.
This is all just from one person's perspective, of course. I know patients and families can come from different and totally valid vantage points. But to sum it up, please don't worry about managing your doctors' emotions about getting a second opinion, and find a place where you can be confident that the folks giving you their second opinion likewise aren't thinking about managing your doctors' emotions. Hopefully, they'll earn your trust that a concurring opinion means they really do think your original team has laid out the plan that's best for you.
As an engineer, embedding such a check step (basically a PR review for your body!) in the standard workflow feels very natural. But in the medical context, getting a second opinion usually needs extra effort by the patient and often involves awkwardness.
It feels involving too much friction given the high stakes. What is your opinion on this?
There is a standard practice at cancer centers which would be more the equivalent of PR review. Often it’s called “tumor board” but names vary (ours is called “case conference”). Depending on the institution and department, all, most (anything but the most straightforward), or some (unusual, advanced, prompted by patient discussion, etc.) cases are brought up for a consensus opinion. Like PR review, the format and formality of this process will differ institutionally, but some version of it is standard as part of the “workflow.”
If the specific department reviews all or most cases as a matter of course, it may not even be mentioned to patients (let alone requiring them to ask for it) unless the consensus opinion alters the original plan. Pathology or radiology consensus interpretations if they occur usually precede the issuance of a final report (so as to avoid giving one interpretation that’s potentially acted on but then amended) and are notated with specific verbiage.
A second opinion generally means transferring records and tissue samples outside the original institution. Think of it more like assigning the same bug report to two teams. There is a role for this, but I wouldn’t think of it as PR review.
When it comes to what the OP was talking about... those of us who are conflict-averse and can't get ourselves to make dozens of unanswered phone calls, are we just shit out of luck if we get into that situation? As much as I hate it now if it involves disputing a mistaken Amazon purchase, I imagine I would just give up if I were already suffering. Is handling bureaucratic gatekeeping the only way to get care, outside a top tier cancer center, in your opinion? My dad's got some money, he's got private insurance. I want to say that if I were him I would have hired an advocate of some sort, to process all of this. I don't even know if a thing like that exists.
Memorial Sloan Kettering is widely considered one of the best treatment centers for gynecological cancers, and they were completely useless for us. The Dr. spent about 15 minutes talking to us and reviewing the case, gave no advice, said nothing in favor of or against the current plan and just said to reach back out after the current treatment plan played out.
This was six years ago and I still can’t think about it much without raising my blood pressure.
Anyway, patient advocate and phone calls/office visits are about the only tools you have. It can be a full time job keeping things on track.
A trusted family member is always a huge help at appointments: even if it’s infeasible to go in person, ask to listen in remotely. I’ve been in those shoes too.
Be overcommunicative, be the squeaky wheel: for our part, we know the difference between even zealous advocacy (great!) from disruptive behavior (not so great!).
Sorry, the system can suck. I promise you that every oncologist has had to make those unanswered calls too, so we do know something of this end of things. But you and your loved ones don’t deserve to suffer for it, so don’t be shy.
The doctors each saw one small part of the case, he was being passed between multiple doctors and NPs. There was no coherence. At one point he ended up on so many medications that made no sense he passed out. Only at the hospital when a doctor looked at everything together did they realize what a mess had been created and got him back on his feet.
I ended up giving all of his records to an agent and making it the coordinator. It found a bunch of problems. He was being given the wrong pain medication on the wrong schedule, the moment that was fixed he felt a lot better (unfortunately he lost so much weight on the wrong schedule it's what got him in the end). They also use voice transcription software, which led to a key error about what genetic markers he had. Fixing this changed his treatment plan!
In general, I wish we had been much more aggressive with this. Last time we had a major medical issue an NP almost killed my wife. At the time there was no AI, so we just had to recognize things were in decline and start being aggressive about getting in with the right doctors (the moment we found the right one she was diagnosed, had surgery and was cured in weeks).
He started doing better when the AI became the central coordinator and doctors/tests/etc. became their inputs. It was an excellent advocate. And while we have science backgrounds, we aren't doctors. But it could present evidence for actions in ways that the doctors appreciated (his oncologist was impressed and called the AI a member of the team).
Unfortunately his physical reserves were very drained at that point. He probably would have had another 6-12 months with his family if it wasn't for the disorganized mess of a care system that we have.
A friend of mine was diagnosed with leukaemia, and the doctor literally told her - get your affairs in order, you got 6months to live, tops.
She spend a day in a daze not knowing what to do, and her parents were like - get a second opinion.
That one turned out negative. The original doctor was like - ah sorry, my bad.
I've had a lisfranc injury, which while not life threatening is very serious and the quicker the surgery is done, the better outcomes.
My podiatrist did X-Rays incorrectly, I told her I'm seeking 2nd opinion just to confirm her findings. I've found a guy that specializes in lisfranc at Rush. He performed correct weight bearing x-rays. It was a bad sprain and not a torn ligament. It took 12 months to completely heal but I was walking mostly normally after 4 months.
Always SEEK 2nd and 3rd opinion if it is something serious. You can also "find" algorithms use for diagnosing and treating suspected condition to make sure your physician is up to speed.
Not all physicians are equal. They also deal with burn out, and have better and worse days.
Results come back: Just some blood under the skin.
This is possibly bigger than second opinions if it's an option for you. Part of it is just volume, the big national cancer hospitals see so many cases that they have super specialized departments & doctors to deal with much more niche areas of expertise.
Your local hospital might have "the skin cancer doctor" but MSK has ~20 sub categories of skin cancer with different doctors specializing in each. And so on for each area/type.
A relative of mine had a rare form of (very treatable) childhood cancer in the NYC metro area. It was diagnosed eventually by the local oncologist in the local hospital. His parents were ready to use the local hospital/doctors until the conversation turned to "and how many of these have you treated before and how did it go?". Sheepishly the doctor said "once and uhmmm, well.. it went ok".
So they sent the files (back in the physical paper files via mail era) to MSK and saw a super specialized treatment team that dealt with this regularly, successfully.
Anyhow, a few years back he found out while being evaluated for a lung transplant at Duke he had stage 2 lung cancer (I don't recall the type). They had actually missed it six months prior on an earlier scan. Thereby dashing his hopes for a transplant. Long story short my brother convinced him to head to UPENN for a second opinon. Where they were at the time, one of a handfull of places in the country that did proton radiation. His SC team convinced him to do one round of chemo as he couldn't get into PENN for another 5 months. He has been cancer free for a few years now. And they credit the Proton radiation.
As a Asian, this is really fascinating to me. We, in general, are conditioned exactly the opposite. We don't trust our doctors, govt or anyone other than our immediate family. Taking a second opinion is just normal. As someone who now lives in the "west", and is now taking a second opinion for a condition, my doctor here was almost offended when I asked for a copy of my results in order to take a second opinion.
Sadly, most Western countries are hellbent on degenerating to low trust societies.
Having done so, from both the asking and being asked, yes I was offended. And glad I was asked after actually doing it. And learned to be insistent in asking. We all have hesitation but we should realize that “expertise” is a relative illusion and peer review is the only standard of progress we have ever demonstrated to be (eventually) fool proof. There are no people I trust in any field to be right for the sake of their name or accomplishments. Society needs that feeling to be stymied and eventually eliminated.
His staff was gruff, there was such limited information as we progressed through the system, there were so many patients there from all over the western part of the US. For many of them it was their first time with cancer, and sitting there in the waiting room with my (non-medical!!!) bio training my Dad would often offer my services to "explain" something. Which I did, and I think I helped, but it was all rough.
The main doctor was so gruff and obnoxious that I emailed my MD friends in Boston (was still in grad school) asking how I could file a complaint.
But at the end of the day that process helped my father (and many of those other people ) get state-of-the-art proton beam therapy, covered by insurance.
Sadly my dad's cancer came back a short time later and he passed away (miss you too Dad).
But now, 15 years later, having been through the healthcare system in so many ways, and having many friends who are academic specialist MDs, I recognize that the doctor in SF was operating with incredible constraints, finite resources, and probably tired. And my Dad got the best possible treatment technology as a result of the second opinion.
But at the time I wanted to strangle the doctor.
I'm writing this just to say that sometimes the second opinion is tough. Sometimes it's in a far-away place or the doctors are jerks. Maybe even borderline unprofessional. They're the bastard operator from hell in their own little world. But again, this is life-and-death.
GET THAT SECOND OPINION EVEN IF THE DOCTOR IS A DICK.
(fuck cancer)
And everybody thinks that with perfect medical treatment, they'd be healed, when in reality that isn't the case. Some conditions are simply terminal and the best treatment in the world isn't going to change that. And you even have the equal but opposite happen on occasion. For instance cancer sometimes spontaneously goes into remission even without any treatment, which is going to lead to a rather great outcome regardless of how inappropriate (or nonexistent) the care may have been. Had this happened to Steve Jobs, we could've seen a catastrophic social cascade begin.
Doctors are going to see those odds and outcomes play out, day in, day out.
I found surgeons to be like SWEs personality wise, so there's that.
And as a patient, if I'm doing something stupid, say I'm an idiot. But just diagnose and treat my illness quickly and efficiently no matter how common or rare.
tldr: I like 'House' type doctors over the opposite.
I wonder if it's a cultural thing. I live in Poland, here we ask for second, third and sometimes more opinions in cases far more trivial then cancer. We do this before any kind of surgical procedure, painful treatment, anything that could be even unpleasant. I saved myself from a couple of root canal treatments just by consulting different dentists. We don't trust doctors at all.
Of course, I know nothing is ever certain here. Still, having two opinions or more data can be valuable, but only when whoever makes the final decision can actually use that information: detecting any bias and deciding with a good balance between risks and rewards.
Of course, if additional tests are done by the second doctor and new information is uncovered, that helps.
My ex-wife was diagnosed with thyroid cancer, and the first doctor said that urgent surgery was needed and both thyroids need to be removed.
She obtained a second opinion from a well-known oncologist, who said that only part of one thyroid needs to be removed, and it wasn't so urgent.
Because everyone wanted to believe the second doctor, that was the option she went for.
This was a very expensive doctor. Shortly after the surgery, he notified her that, in fact, the cancer had spread to both thyroids, and the other one had to urgently be removed as well. This led to double the medical bill, opening up her neck twice, and all the accompanying inconvenience of two surgeries.
It was a strange situation where an incorrect assessment by the doctor directly led to that doctor making more money.
Also, it highlights the tough decision in terms of how you decide between two conflicting opinions if there are no additional diagnostic results to assist.
There are generally clear discriminators determining whether a lobectomy or total thyroidectomy is called for. What is missing here is the detailed discussion with the two doctors of exactly why they were recommending their course of action and what attempts were made to reach consensus. "everyone wanted to believe" is not the way to go about such things ... but there's a good chance that the evidence favored the less radical course. A lobectomy has considerably less radical consequences and so is strongly preferred if a total thyroidectomy isn't indicated. But it's not uncommon for the pathology report of the removed lobe to indicate high-risk features that call for a "completion thyroidectomy", which is what your ex-wife had. It's not some nefarious conspiracy to make more money.
With "everyone wanted to believe" I was referring to the patient and family.
It was (is) difficult to get appointments with these doctors as they are fully booked months in advance and there was no opportunity to consult with them again or get them to discuss the case with one another. Hence the decision had to be made with the information that could be remembered from the consultations. (These days I always record all doctor's consultations for future referral, as memory / recall is of course notoriously bad.)
I don’t regret it.
In the first case, I decided to talk to an expert in the particular area who then ordered different tests. These indicated the issue had actually gone away completely, and I avoided surgery as a result of those.
In the other, a grade 2 ACL tear, it was less clear-cut, but I felt like the explanations given by the second doctor as to why he'd recommend against surgery were clearer and made more sense to me.
I'm glad I got both second opinions and the first case in particular, made me much more likely to get second opinions in future as well as more confident about doing so.
So, unless the first two opinions are completely identical - yeah, definitely get the third. Better to go for people with slightly different specializations if relevant.
Particularly with cancer, when earlier treatment is better.
If doctors improve (maybe by using better analysis tools), hopefully it will no longer be necessary.
My late wife was treated for metastatic melanoma at MSK. Their approach is to have clinical teams and a tumor board that are assigned patients with related cancers. They are seeing many patients and there’s a warm hand off between specialists. Your radiation oncologist, medical oncologist and surgery / neuro specialists are on a team and know each other and are often familiar with the cases. In my wife’s case the community oncologist was wonderful, but he was a sole practitioner for this particular cancer.
In the second opinion scenario, they get to use that experience and caseload to look at a case with some perspective. Your community oncologist likely works on a small team and may not have the luxury of time and exposure to trials, etc.
Think of it as a second set of eyes.
Anyway, I would say I actually had relatively positive experience with Thyroid cancer. I had been seeing my Endo for 10 years at that point since I had hypothyroidism. His nurse was on top of everything. Very calm and reassuring during the whole process.
But all my experiences with the healthcare system outside of that were just disappointing. I had RCVS 2 years ago and I was in the ER and the radiologist summarized the report wrong even though he has read it correctly. They were starting me on stroke protocol and giving me these drugs but I had ChatGPT read it and it was like this is wrong. It's supposed to say no significant stenosis in the neck. It actually said significant stenosis in the neck. The dr reported it immediately and the radiologist corrected it. What a shit show. No one could even give me a straight answer on if I could go back to exercising or when I can get off a medication. Every doctor I saw was completely different. Have a few other stories like that pre LLM's. But you have to advocate for yourself. And always double check the doctors with LLM's now a days.
I don't recall the specifics, but there were symptoms of an ENT infection, nothing serious. I remember being concerned about a white lump on one of my tonsils. The doctor's diagnosis? A stuck piece of rice.
No, it was not a piece of rice. It was a tonsil stone. It happens almost every time I get sick. And I guarantee that if I shared my symptoms and a photo with AI, it would render the same conclusion.
Would it be dumb to blindly trust everything a model says? Sure. Should you trust it alone, especially for major issues? No. But having received such a stupid and brain-dead diagnosis from a supposed "professional" doctor in the past, I would never give them the automatic benefit of the doubt.
Current frontier LLMs are incredibly powerful diagnosticians. They will generally give you the best assessment that can be made on the basis of the information you include in the prompt. So it's important to make sure that information is accurate, and also that it's phrased well enough to allow the model to weigh the importance of each detail.
Unsurprisingly, the same tips are important when communicating with your actual doctors.
Treatment for cancers such as lymphoma unavoidably result in the immune system being basically destroyed... so patients are, at times, unbelievably vulnerable. My brother ended up in A&E several times. Sometimes it was a false alarm - just nasty but normal side-effects from the treatment. But, several times, he had caught an infection that required IV antibiotics to resolve. He ended up on PipTaz several times and Vancomycin at least once.
You would think an immunocompromised cancer patient would go to the front of the line. But this was absolutely not his experience. Even though his wife repeatedly told anybody who would listen about his situation, he was nevertheless subject to huge delays in diagnosis on multiple occasions.
And - this is the point of my post - delay in treatment for an infection on one occasion resulted in sepsis that was only diagnosed when his wife eventually persuaded a doctor from the cancer ward to come down and look at him herself.
Absent his wife's borderline aggressive/hysterical advocacy for him he would be dead.
My takeaway was that the 'best' situation, therefore, is one where your cancer hospital is a genuine specialist centre AND your local emergency department is highly rated and sees a lot of cancer patients and so knows what to look for. If the latter is not the case, you will need an extremely effective and tenacious advocate to fight on your behalf.
Sadly some will be. But they are to be avoided anyway.
This is literally life-and-death. My recommendation is for full transparency, it was crucial for us.
You should really try to have a copy of your own records. Different sorts of clinics may sometimes make it difficult to get a copy of studies, reports, etc. but it's something you should really insist in, to the point of avoiding places that don't give them to you. It lets you have greater selectivity of your healthcare providers by not depending on a provider for access to your own medical data. Resist the lock-in.
Also, providers may not archive your data forever. I've had one that realized my records from a visit some years earlier had been discarded/lost. They would have been really useful to make a comparison.
Having your records yourself, you won't have the need to tell them so they can ask for your records to the other provider on your behalf.
It's a good idea to tell them you came to them for a second opinion after they've already given it, so they can also give their opinion on the first opinion. However, that's different from telling them so they can get your records when you should already have them yourself.
And she's wealthy.
Thanks for your kind words about FCCT from the Sijbrandij Foundation. We help people look beyond the standard of care for cancer. Calling with them is a free service.
My experience: I was horribly sick for 10 months, none of my local doctors could figure it out, then I drove to Penn Medicine in Philadelphia and they did the right labwork in the first visit. These top centers just have different mindset than your community hospitals.
The specific term is called "NCI Designated Cancer Center". If you can go there, do it.
Just take the mindset of - if this gets screwed up, where do i get sent to deal with the screw up, and just go there first.
the crazy thing is, as mentioned above, they probably take your insurance and your not going to end up paying more to be at a top notch facility.
Once you're at that point, just go to the top of the list for whatever specialty and fly out of state, or even to a different country. US healthcare is so absurdly expensive that flights and hotels kinda have to be cheaper than the care no matter how crazy you go.
I agree with you in spirit but once you know you diagnosis most cancer treatment isnt actually that complicated because we dont actually know how to treat cancer.
We went through enhertu which worked for about 3.5 months and relieved the blockage and she was able to eat again and get off IV nutrition. It obstructed again and her markers rose sharply in the summer, we did a course of taxol and are moving to trodelvy next week.
All of this has been entirely predictable, standard of care patterns.
But the standard of care for my wifes disease right now is a march toward death and I refuse to accept that.
I spend my every evening talking to every LLM, practically bargaining and begging for one of them to give me a thread of hope.
I appreciate this service and we will check it out. We are desperate to find something, I recognize ILC is tricky and complete obstruction is usually a death sentence, but we have to try right? She is 49, we have 4 kids.
Anyone out there, any ideas...any longshot, we will do anything.
Since you have biopsies, find the targets of the specific cell line in question, and research what you can do against them. Ignore the advice that tells you nothing is relevant because it's impossible to reach cytotoxic levels of some compound you're researching in one's system. You don't need chemo-level cytotoxicity. You're nudging the environment in the right direction, not aiming for a response the next day. Consistency wins the day. And that device reeks of scientific reductionism, and ignores things like metabolites, your microbiome, and so on. People in particular downplay the microbiome which seems to be directly involved in the immune system. You need to feed those buggers. For example, it's now established science that those without akkermansia do not respond to immunotherapies like PD-1 inhibitors. How do you get akkermansia? Ellagitannins. Walnuts, pomegranates, etc.
NF-κB is an example of a target. It seems to be involved in most, if not all TMEs. The great news is that plenty of things can downregulate NF-κB. For example, exercise (non-negotiable, the best medicine, if your wife can do any), berry anthocyanins, and even omega 3 DHA and EPA. The latter is in particular interesting because omega 3 is needed in inflammation resolution, and directly affects NF-κB. Anyway, find the appropriate targets, and do what you can do move them.
My other piece of advice is to make sure there are no deficiencies. Do the blood work. Make sure vitamin D levels are up there (they modulate the gut microbiome and immune system), omega 3 index (not free plasma, but the one that measures the actual weight taken up by cells, it's a more expensive test) aim for 8%, and so on. Sun exposure (not for the vitamin D, but also that) is also great for mitophagy. There are studies showing that cancer patients with sun exposure have better survival outcomes than those that don't get any sun.
Sorry you have to go through this. I pray that you and your wife, and everyone else involved have the strength and wisdom to get through this.
No idea what part of the world you're in, but my cousin was stage 4 skin cancer, on his way out, and his doctor managed to get him into a clinical trial at Dana Farber in Boston, MA.
Literally saved his life. Experimental immunotherapy program was the trial.
Hoping a miracle comes in your direction somehow, someway.
A great resource: Cancer Patient Lab. Check them out - they might have longshot suggestions for you. Dr. Dan Flora at St. Elizabeth is an amazingly compassionate oncologist and also might have some ideas for you.
This is probably very unwelcome advice, but I would strongly recommend a spiritual practice of some kind. When things are wretched, slowing down for a moment and turning inward can help. Prayer (to whatever form makes sense) or at least Yoga (something that isn't passive) may be more helpful than meditation in these circumstances, but I appreciate this might not be right for you.
Have you checked out any international Clinical Trials? You can search a lot of these here: https://clinicaltrials.gov/ getting the filters right can be tricky though. I’d ask AI for some help looking for the right permutations of names for things.
I’d book a call with FCCT as well. They have a list of private vendors that can potentially help with genetic sequencing and a few other things. They also mentioned a service to me that helps you search for potential clinical trials.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7409346/
Get LLMs to hillclimb your wife's treatment. The target isn't exactly verifiable but you could iterate on ways to add verification signals. There's a huge difference between asking an LLM: "hey claude, my wife has cancer, I want your help with x,y,z", which mode collapses it into extreme over-caution; versus setting up the problem like an eval, which sends LLMs into a frenzy trying to solve it no matter what.
Second thing I can share is the man who created an mRNA vaccine for his dog Rosie's cancer, and it worked! https://news.unsw.edu.au/en/meet-the-man-who-designed-a-canc...
The OP is understandably desperate for something that can save his wife. I would be too!
However, they appear to be seeking something akin to a miracle via chatting to LLMs, and the likelihood of such an approach yielding anything useful is very, very low.
I'll probably be downvoted for my suggestions, but here I go (I'm from France).
I would recommend changing diet, in France the "Seignalet" diet is well known. Avoid sugar, mammal products (dairy, meat).
When you have no known solution to a problem, you have to try some out of the box solutions.
As desperate solutions, try "healers" or personally try Reiki or Zhi Neng Qi Gong or similar techniques. Find one near your home. Be careful: most "healers" are completely crazy (hoping to become gurus), some are money-oriented. Most Reiki teachers are greedy.
Update: thank you for the downvote, whoever you are.
Eating clean proper ruminant meat will not be bad for you. What you eat with it is another issue..
Here's the experts showing that meat is heavily linked to cancer:
"The International Agency for Research on Cancer (IARC) classifies processed meat as a Group 1 carcinogen (meaning it is carcinogenic to humans), and red meat as a Group 2A carcinogen (meaning it is probably carcinogenic to humans)."
https://progressreport.cancer.gov/prevention/diet_alcohol/re...
Oh dear, someone gets their health advice from streamers and podcasters rather than actual health professionals.
The seed oil thing is nonsense.
> Eating clean proper ruminant meat will not be bad for you
Eating too much beef is bad for you in a variety of ways, it's associated with high blood pressure and high cholesterol, cardiovascular disease and type 2 diabetes.
It's frickin' delicious, but it's not some panacea superfood, quite the opposite.
For one, every way I eat is based on trial and error. I've read many books and studies throughout the years. I have tried a whole food vegan approach for 6 months in 2020, which was terrible for my IBS. I struggled with ibs for years until I started figuring out stuff. I come from a family that is chronic in their seed oils use, and other processed food. When I tried to cut it out from my diet completely, I had improvements in my gut, as well as my skin and migraine. I am diagnosed with idiopathic urticaria, migraine, and IBS.
Solving my issues has been my main goal since I was a 115kg heavy teenager under 165cm. I managed to lose all the extra weight, but not without all my problems mentioned. Therefore I started experimenting from 2017. The last 4 years has been amazing regarding health and diet.I mainly eat ketogenic diet, and no seed oils at all. Only carb I do eat occasionally is potato. Potato seems to not trigger anything for me. Current weight is 86kg, and been maintaing around this for years now based on my gym schedule.
I don't care about what streamers says at all. Unless they have tried it themselves for longer than 90 days, then it is invalid in my opinion. Just assuming that my advice is based on advice from streamers and podcasters is plain stupidity. If I can create the food myself from ingridients and animals around me. Then it also means humans did for ten thousands of years prior. Seed oils did not even exist before modern times. I do not count olive oil as seed oil when I say this.
Disclaimer: I have spent hundreds on hours on reading shit like this. How much time did you spend on the topic food? Did you transform yourself from trial and error?
You can bring it down to 70, get lean
Ok, smoking, air pollution, mining runoff and water table poisoning, industrial waste, low-nutrient density foods, processed foods, sugary foods, red meat, Soda, energy drinks, lack of preventative care, lack in general of practical and affordable healthcare, alcohol, I could go on with hundreds of other things. But sure, seed oils are the problem. All of these are much more harmful to society than seed oils. Sure, are they used in excess? I'll grant that, but replacing them with animal fats is awful.
Linseed oil (flaxseed oil) is high in ALA and omega-6 fats, it could cause a REDUCTION in inflammation in some cases. It has the best omega-3:omega-6 ratio I know, and plenty of others are not harmful.
It sounds like you found something that works for you, but please keep the misinformation out of this convo.
Your list is true if you remove red meat from it. Obviously no people should be smoking, drinking, using plastics around food, do some gym or other fitness daily .. and so on.
Congrats on the weight loss (genuinely), but it’s very unlikely seed oils are any sort of factor in themselves.
All the big meta-analysis studies show it isn't really bad for you. Do you have a study to show the contrary?
But there's nothing to suggest eliminating meat can help combat cancer or increase survival rates. And good nutrition -- including and especially protein -- is critical while fighting cancer. Switching to a plant based diet usually makes this harder for people.
Don't throw around stuff like this. It's pseudoscientific, at best.
> thank you for the downvote, whoever you are.
You're welcome.
Watch the free documentary and you’ll see.
That’s a tough one.
I've made plenty of lifestyle changes over the years based on actual research, the most recent of which was cutting down saturated fat which cut my LDL cholesterol by over 50% in 6 weeks. But I don't put much stock in these documentaries that are incredibly biased. Only stupid people can't see just how biased they really are. They are created just to ride the plant-based diet trend to make money, don't you see that?
Also it's funny because you know nothing about my lifestyle but you are attacking it just because I don't follow a strict plant-based diet. You are in a cult and you don't even realize it
I have heard about more success stories where people did a 180 on their diet, than those who just keep eating like they did before their diagnosis.
The boring part about this, is that if it does not work, you spent the last part of your life eating really restricted.
One thing I would mention:
You are not dealing with a monolithic entity with regards to a hospital.
There are really multiple groups with oftentimes competing interests e.g.
- case manager wants you out and home b/c that is the best "score" for the hospital. They also DO NOT want you to qualify for Medicare if you are a senior b/c, again, "score" gets dinged if Medicare gets involved
- surgeons want you out as they don't want you to pick up hospital infection. They want you to go to a rehab facility as that will more likely lead to a good outcome
- the hospitalist wants you to be stable in the short term so will pump you with whatever medications are necessary to get you "back to normal" without addressing any root cause
- the nurses generally care about you as a person as they deal with you the most but oftentimes have the least amount of say over your case
- in one of those perverse incentives/unintended consequences: if you do TOO well on a physical ability test, that might disqualify you from certain coverage even if you are below the threshold on other ability tests. That can have gigantic insurance implications.
This is prompting me to write my own version of the OP blog post.
This really rings true with me after my experience having pancreatitis earlier this year. I ended up hospitalized THREE times in the span of a month. The initial hospitalization was for the pancreatitis (which became necrotizing pancreatitis, this is important). Then I was discharged after the pancreatitis pain subsided - I think at that point they had noticed that a psuedocyst had formed next to my pancreas but they didn't see it as an issue and wanted me to get it looked at outpatient.
A week later, back in the hospital, jaundiced face and eyes because it turns out the psuedocyst that 'wasn't a big issue' was compressing my bile duct, which were causing multiple issues. They did some tests, my liver enzyme tests went back to normal (briefly), they discharged me again.
Another week later and my liver enzyme tests had skyrocketed again, and I was instructed to go back to the ER again. This time we didn't take 'oh you'll be fine, deal with it outpatient' as an answer and insisted that they look deeper into it after the 2 previous hospitalizations, and they ended up being able to 'scoop out' the stuff in the psuedocyst and finally have it go away and stop causing issues
It doesn't prepare you for all real stuff: you need to get ready to die. You need a plan for your trust, your estate, your funeral, and how your family will deal after.
You should have these plans in place before cancer because you could get hit by a bus. (I didn't because I'm stupid but maybe learned a few things the hard way.)
The fact that you’re commenting here tells me you have tremendous mental strength.
If I can add, for the benefit of other readers… One thing I learned is every case is different. Different cancer. Different body. Different support network. I’d suggest to anyone hit by this bus to never lose hope and keep an open mind about options (second opinions, calling in favours, moving, etc). Wishing you all the best.
Obviously feel free not to reply if you don't want to share, I'm just curious, thanks
My first symptom I noticed was consistent blood on stool, still remember that day I first noticed it.
That was later followed by stomach cramps (obstruction) and night sweats (the stage 4 part).
Remember, cancer does not wait, get it checked if you notice anything out of the ordinary.
- Take it one day at a time
- Schedule time for yourself fairly often to do things you like that are away from treatment and away from your home
- Prioritize sleep!
- Set up a meal train so at least some meals are taken care of. We prioritized chemo weeks for our meal train
- Make a countdown to important milestones. It's okay to wish this time in your life away
- You will feel lonely. Have some friends you know you can call
- Find a cancer caregiver support group. Other cancer caregivers "get it" better than others
- Celebrate the milestones, all the time, forever
Personal story: I was having trouble using my left arm. Like, couldn't lift or type or do much of anything with it. Was told it was a pinched nerve by physiatrists and orthopedists, despite having no pain. Only when I specifically requested for a referral to a second neurologist did he order the head MRI which exposed a brain tumor in my motor cortex. We were able to move quickly and get me on a treatment plan which has bought me a lot of time. Had I not advocated for myself, it would have probably mutated into a much worse type and killed me soon.
People can't ignore you as effectively if you're in their physical space. When it comes to your health or the health of your family, do not back down. Doctors are used to nuts who googled the symptoms or joined a Facebook group and have all the answers already. Make it clear you have NO answers but NEED them asap.
One of the things I've learned is to apply the Socratic method, preferably in front of their colleagues if they try to brush you off. Also, if you've got scary symptoms, demand they write down what your symptoms are on your record and why they aren't concerned, then demand a copy of all relevant records (it's your property) -- this often gets them to reevaluate your risk in terms of their career.
Worst case scenario, you can make up medical history. I had a family member pass recently from colorectal cancer. They had symptoms but their PCP kept insisting they were too young. My family member suddenly "remembered" her aunt died of CRC when she was a kid. This got her referred to a gastroenterologist, and they found out she was stage 4...after her PCP delayed her diagnosis for like a year. She actually had grounds for a malpractice suit but who's got the energy or money for that when they're fighting stage 4 cancer?
Also, know your state's agency responsible for policing health insurance. This family member's insurance company routinely tried to deny life saving procedures, but a call to the right govt agency set them in line each time.
Here in Mexico, i can get to doctoralia and make an appointment with a high specialist , like a Vascular Neurosurgeon. All by myself. The first visit will to maybe $200 usd (and that's very high) and normally it's a week away at most. No waiting on the private health option.
Of course if you go with public health, it's a disaster and a shame.
I often try to go cash pay, since in many cases at this point it's actually cheaper, absurdly enough, and get told that I can't even get an appointment that way. I actually got kicked off primary care at a regional (fairly large) practice because they couldn't take my insurance, would not bill out of network, didn't service uninsured people (!!), and would not take cash, credit, barter or trade.
The advantage of the less developed countries is that you can get pretty good private medical care for a reasonably price. The quality may not match the very best care available in the rich countries, but in many cases, it is adequate.
What is a "reasonable price"? Relative to a rich country, the price may be low. But relative to the average income to common folks in that country it is likely just as expensive as a comparable private option is in a rich country. Apples vs. oranges.
Iow, you are describing the perspective of a rich person in a poor country. I don't think a rich person in the U.S. (top 0.1 percentile, let's say) minds the health case costs in the U.S. either.
Of course the top tier private hospital and specialists can be pretty expensive, but is not that expensive to avoid the public/government health system.
More common specialists you can just book with. I got an appointment with a cardiologist with no fuss.
> Doctors are used to nuts who googled the symptoms
When you were there, did you have anything else to come with than the symptoms of your family member? In other words, how did you look different to the doctor than somebody who just googled their symptoms? (Or, to put it differently, without meaning disrespect, in which way were actually different from cases you referred to in the above quote?)
And then I sat in the nurses station until the doctor finally took time to listen. They threatened to get security, but I just kept my head and kept pointing at the things the doctor himself wrote.
I didn't try to interpret anything, I didn't do any diagnosing myself and I didn't try to act like he didn't know what he was doing. I just kept saying that it was more serious and we needed a second opinion.
Does that help?
A good shorthand is that unless a doctor has positively identified something through imaging or biopsy do not trust them when they tell you what something is or what to do about it.
If you aren't sure how best to advocate for yourself, use AI to help figure out what tests and referrals to ask for. You might feel like a jerk, but don't expect anyone to care about you more than you do.
Not a doctor, and not a case worker, but someone with a deep knowledge of the American health care system and infinite patience. A trusted person to take you to and from appointments, to chat with you about how things are going, and handle paperwork.
It would be expensive, but I think it would pencil out for most working professionals who don't have the time or energy to navigate everything for themselves or for a loved one.
The next important one is to find the best doctor you could afford. I didn't have a lot of faith on my local oncologist, especially when he said that my cancer (nasopharyngeal carcinoma) is rare and had not much experience with it. I was able to get ahold of the chief surgeon at UCSF, purely by luck. Felt a lot better when he said that this type of cancer is pretty common for south-asian descent. He has dealt with it quite often due to a large concentration of asian in the bay area.
The treatment sucks, but small price to pay considering I can spend more time with my family.
One thing I noticed is that the oncologists managed my brother far more than they actually worked on his case; oncologists are often overworked and, by necessity, desensitized. They are aware of new treatments because the pharma industry takes good care of that, but they are way less willing to read scientific literature relevant to a specific type of “rare cancer” present in a “single patient”, and they actually need the two things to be effective.
I feel for you and for your family; may the stars align for you and you get to be out of your crucible with the least amount of suffering.
I'm lucky, in a way that the stage was low (stage 2, T1N1, low-risk/low-EBV). My entire treatment (chemo-radiation) was done in ~3 months, and my team of doctor knew well what they were doing. The side-effects of the treatment last for years unfortunately, something I have to deal with.
It's been 3 years on remission, no sign of cancer/marker anywhere. I'm grateful.
And people like this are typically not that difficult to get in contact with via email.
Hell, I’ve successfully used LinkedIn to get an appointment when calling the main office didn’t work.
Get creative and trust no one.
Don’t forget, Doctors are just well read mechanics
Oh my. I did not expect this.
I'm glad you caught it early, and I hope you have the best outcome you can, and thank you for sharing your story.
But GP's point is otherwise true. It's just a job to them. They see dozens of sick people every day. There's no way to be empathetically engaged with all of them or really any of them and still be effective. It's not personal, and they aren't ignoring you. You're a bug report in their ticket system. Understand that and you'll be able to deal with the system more effectively.
The exception to this rule is if you are in an HMO like Kaiser which force you through "level one support" (your GP) or if the specialist is so busy they require a referral to screen out the social media schizos.
If you saw a concierge specialist that is cash pay only they'd probably see you no matter what though.
By all accounts is amazing to her patients, but god the amount of work thrown at a PCP and the deluge of emails and just how little life the system gives you (at least while in residency, I guess I'll see what happens after)... like I have to imagine our care could be so much better if we weren't trying to optimize the system and had more resources.
My mom is a teacher and it's similar there, she loves kids so much and after a few decades she absolutely cannot wait to be done. She was excellent at the start of her career and got kudos from absolutely everyone but now she's just getting by until retirement because she can't take it anymore.
"""There was not enough of the patient to go around, and specialists pushed forward in line with raw tempers and snapped at their colleagues in front to hurry up and give somebody else a chance. A colonel with a large forehead and horn-rimmed glasses soon arrived at a diagnosis. “It’s meningitis,” he called out emphatically, waving the others back. “Although Lord knows there’s not the slightest reason for thinking so.” “Then why pick meningitis?” inquired a major with a suave chuckle. “Why not, let’s say, acute nephritis?” “Because I’m a meningitis man, that’s why, and not an acute- nephritis man,” retorted the colonel. “And I’m not going to give him up to any of you kidney birds without a struggle. I was here first.”""" - Catch 22, by Joseph Heller.
I should have mistrusted the doctor and trusted the AIs more, unless they gave me compelling reasoning. Don’t give up your decisions to anyone, incompetence is abound.
You’ve dealt with every health system on earth as a patient?
> There are no specialists in all of the government-run systems
This is completely inaccurate. Every government run system has specialists.
Everything you have said is incorrect.
That doesn't sound great to me (read: broken), because it means its not evenly accessible across your society. I wouldn't count that as a good system to be honest.
I have limited experience with the New Zealand and Japanese medical systems, and from a similarly arms-length engagement with them, I think I would prefer them over everything I've read about the US system. You still have the same issues with having to advocate for yourself, but you can at least get access to good healthcare across the board - and if you go private (which as a late 30s / early 40s guy, cost around NZ$60 / month), you can get access to care at private facilities much faster than via public.
It is most definitely imperfect, but it _is_ designed to be accessible to everyone.
The way system (and patients) survive is by relying on "connections": someone you know gets you to "jump the line" (it could be a nurse or a doctor or even a janitor at the same hospital you want to get a specialist to see you).
It ends up being similarly "fair" (iow, not), but at the very least, everybody will prioritize kids and young adults (though in children's hospitals, same pattern is present).
Private healthcare is reasonably accessible, but best experts are with public healthecare institutions (uni clinics) or when working externally, booked 3-6 months in advance.
You read that where? What evidence do you have? In my experience, Americans are often blissfully unaware about how poor their health services are.
As someone who has seen many health services up close (from founding a health tech company and literally visiting myriad health establishments around the world, over the past few decades), the US hospitals and clinics always struck me as the most run down. But as soon as I walked in the boardroom at UHG or HCA, it suddenly all became a lot more glamorous.
And whilst the US does ok with cancer outcomes, so do other nations like Germany, Switzerland, Japan, South Korea, Singapore, Canada, and the United Kingdom.
Most advanced nations have universal healthcare with similar outcomes to the US, but for significantly less money. They also don’t leave citizens destitute for having the unmitigated gall to impose an unexpected health emergency on themselves.
The US system funnels profit, it doesn’t provide better healthcare.
In the rest of the world, it's controlled by extended wait times. In the US, it's cost. You can have moral arguments about what's fair, but that's the economic reality.
At the time I as studying this (early 2010's), the average wait time of diagnosis to first treatment for breast cancer in the US was 12 days. In NIH, it was 5 months.
No they didn't.
There are tons of specialists in Canada. You're talking out of your ass.
>Canada introduced MAID for this reason.
What is it with Americans being so confidently ignorant about everything?
Canada introduced MAID because someone who wanted MAID sued the government and asserted that banning MAID violated their constitutional rights. It went all the way to the supreme court, and the (federal) government fought tooth and nail AGAINST allowing MAID.
It should be noted that the Provinces are responsible for healthcare, but it was the federal government who banned MAID prior to the 2015 supreme court case via the criminal code.
So, in short, stay in your lane. You have no idea what you're talking about.
They rolled out the red carpet for us, they gave us everything, we essentially had a direct line into the oncology ward. They also gave us all the meds we needed. At one point we wanted to go to SE Asia and they gave us twice the meds we needed for an entire month so we could mail one half, and take the other half with us, with doctor's notes, as redundancy!
And no we didn't pay a dime for any of it.
But if you don't have cancer, then I agree with the first statement of the blog, you really have to act as your own project manager when it comes to health care.
Nurse staffing ratios are 1 nurse to 2 kids or less, we get private rooms with a bed for parents, broadband wifi, and extensive food menu to order room service from all day. We also have the email addresses of our oncologists, 24/7 phone number to oncology department, and we got opinions from 4 other cancer centers in the country to confirm treatment was appropriate (luckily there is a lot of data).
But we just went with standard national insurance, and the total cost is never revealed to us so I can't even tell you what it costs on their end.
We reach a certain level of cost, it was maybe around 250 dollars at that time, after that threshold they pay everything for the rest of the year, until the threshold resets
Minor addition: When you talk to someone who has undergone the surgery, try to find someone that's a similar age and in similar shape to you, otherwise you may get wildly varying answers.
You'll respond, experience and heal from a surgery quite differently at 40 vs 50.
This is certainly another data point for "never trust AI chatbots".
The folks who actually go work in the field, understand the structural problems, the costs/benefits, and the long slog to bring successful treatments to patients are skeptical. But we're still more than happy to be proved wrong- if Anthropic (more than OpenAI) is working on life sciences and drops some amazing information that transforms cancer care with massive positive results, we all win.
Do we all? Or does anyone with enough money to pay for Anthropic's IP, win? Nothing states that Anthropic/OpenAI/... have to share information they have generated. As the crunch for income becomes real, I doubt valuable things will remain free.
If they succeeded, you can bet everybody else will be duplicating their results within 2-3 years.
Doctors might do the same thing, of course, but at least then there's a real (accountable) person responsible for deciding that "threshold."
[ if I gave you a picture of something on my skin could you diagnose it as a melanoma ]
No, I cannot diagnose skin conditions or identify melanoma from a photograph.
AI-based image analysis cannot replace a professional medical evaluation. Skin conditions—especially potentially serious ones like melanoma—require a physical examination, and often a dermatoscope or biopsy, by a qualified healthcare professional such as a dermatologist.
99% of the time I'm asking the AI medical advice questions because (1) there is no specialist available on short notice (2) most specialists I actually see do not give me the sense they take things seriously enough (3) a lot of specialists are just incompetent.
Oh, it absolutely can. If it's bloodwork I can absolutely get that done through Function Health or similar platform without a doctor's order. If it's imaging I can fly to another country and get it done faster and cheaper (including flights and accommodation) than the insured price in the US.
I also give the AI access to all my medical records at 6 institutions in 2 countries over the past 15 years, and it draws upon that context. Doctors don't usually have time for that.
An LLM might be great for summarizing that wealth of information for a doctor to consume, but it won’t compete with a doctor’s judgement or knowledge of their practice and institutional knowledge.
LLMs, even at their theoretical best, are limited to publicly recorded knowledge. If you want to know how extremely limiting this can be, look at the surgical outcome rates of surgeons by educational experience, vs outcome rates from surgeons based solely on experience. Surgeons with more experience have far better outcomes than those with any other attribute.
I vehemently disagree, based on the number of times doctors have misdiagnosed me, and AI or other internet searches have yielded a correct diagnosis and treatment.
It won't compete with the top 5% of doctors, but most of the time you are not going to get to see a top-5% doctor.
Having a doctor does not guarantee good judgement or good experience. But an LLM is guaranteed to have neither judgement nor experience.
Get a second opinion, or a third. Don’t get zero opinions.
And most of the time, you don’t need a 5% doctor, you need to find the one with the correct background of experience. Every misdiagnosis I’ve ever had was because I was at the wrong specialist. If you don’t think you’re getting the right care, sure, ask your LLM for alternatives. Then go speak to specialists in those fields.
It's an extremely slippery slope to having it say that about even the most basic medical information.
If you don't believe me, try any google search related to something as simple as hangover tips. The AI summary will tell you to call SAMHSA and then brutally stonewall you on anything else even tangential to alcohol.
But you definitely want to scour the entire search space for solutions.
And the most efficient means for that is LLMs.
It's my experience that doctors are compartmentalized in their thinking, limited in their time, and definitely will not be extensively exploring your case.
E.g., I had 30 years of resistant hypertension. Multiple medications. Saw many cardiologists. Nephrologists. I was told to "just lose weight." BP was erratic over the years. ER visits. It was awful.
I googled. Pheochromocytoma. Hyperaldosteronism. Asked the cardiologist, "Could it be this?"
"NAAAAH, just lose weight."
But I insisted on a referral to an endocrinologist. And when I suggested it to them, given my extensive history, they were basically like, "Oh yes, we'll get you tested. I'm surprised you haven't been tested before?"
I had a left adrenalectomy 6 months later. BP has been controlled ever since.
They don't know everything. They can't.
Very few diseases are caused by individual mutations like that (typically only monogenic Mendelian). Individual mutations typically cause an increased propensity, or severity, rather than being the sole or root cause of a disease.
You're talking about polygenic traits. That's a different ball game entirely.
- You should pressure test anything an AI says with your doctors, and anything a doctor says with AI.
Find a decent primary care doc who is not impossible to schedule with. Someday, if you do have a problem, the primary care doc will be able to send you off for scans, etc. much more easily when you are an existing patient. Getting appointments as an existing patient is much easier.
It took me decades (and a ton of advice from my wife) to understand how medical systems work and to get the results I want. Having a good relationship with your PCP is invaluable.
Anyone can book a call for free to discuss potential diagnostics and therapeutics in and outside the standard of care.
Link: https://calendly.com/bayli-sijbrandijfoundation/fcct-introdu...
jakeseliger.com
bessstillman.substack.com
The first cancer-related post - https://jakeseliger.com/2024/05/25/the-one-year-anniversary-...
Bess is an ER doctor, but even with all that medical knowledge, navigating cancer care seemed difficult.
So those with no medical knowledge from themselves or family or friends may have a much more difficult time.
If I ever get such a disease, I have it in writing with my family that I will not seek any treatment after the first recommendation, I will not do experimental treatments and I will not prolong a life of suffering. Rather go out under my own terms.
I'm forever grateful to Jake for writing his experiences in such detail and candidness.
It is only by giving people too much and too little chemotherapy that humans figured out the dosages and regimens that optimize survival and minimize relapse rates.
I think about it a lot when I see kids in the pediatric cancer ward, and what decision I would make for myself, versus the decision to subject a child to very painful treatments to kill the cancer. And how mine only has a good prognosis because so many others went through hell, and didn’t survive.
My big takeaway from the whole ordeal is that you need to take a very active role in your own treatment. Unfortunately I was only able to become actively involved in managing my mother's treatment in the last few weeks. What I saw was a clear pattern of (what I'd regard as) negligence. There were so many missed opportunities to provide the care she needed. I came to the sad realisation that if you're not cracking the whip, many doctors will take the path of least resistance, and that in many cases, the only way to get documentation or help as a relative is to be ready to kick up a stink in-person.
I'd be happy to go into more detail.
Anyone can schedule a call for free to talk about diagnostics and therapeutics in and outside the standard of care.
Link to book a call: https://calendly.com/bayli-sijbrandijfoundation/fcct-introdu...
At least, if it's a common cancer, a group will gather accumulated wisdom and can research better than a single person.
Also, they can help more with practical questions, like financial aid, how to manage sleep and pain, etc.
There are many good resources out there that will not gloss over important details, and have experience (hard-earned) behind them.
Best of luck to the author and everyone dealing with it, stay strong!
FWIW, I have successfully addressed a few personal health issues in collaboration with AI: soft plaque reversal as quantified via CIMT testing, and bringing my slightly elevated blood pressure into normal bounds
And I'm making significant progress in optimizing my health. It's not without its flaws, but I find it's a great interface into the broad field of medical research, and better than any doctor I've known at integrating a broad set of medical data from disparate sources.
That's my anecdote, and here's another: https://www.astralcodexten.com/p/our-ai-midwife
If Texas isn't for you, Memorial Sloan-Kettering Cancer Center in NYC is the next best bet AFAIK.
Honest question - when physicians steer their patients, do they have any specific instructions or obligations with regard to who and what they are optimizing for?
For example, if you visit any online space where (self-reported) physicians are sharing their opinions on any of the newer self-paid testing services (e.g., Function Health blood testing, Prenuvo MRI scans) you'll clearly see some of their internal calculus around why these services are good or bad. The thing that I've been surprised by in the past is that the "impact to the system" often comes up as a reason not to use these services. Yes you the paying consumer might learn something about yourself, but it's a bad idea on the premise that you might be crowding out someone who needs the care more than you do.
I can respect that point of view, but if that is part of what informs a physician's recommendation, it should be clear and explicit. Is this something that any code of ethics covers? Optimizing for the patient in front of you first and foremost?
My problem with Prenuvo is not the screening aspect; it’s that Prenuvo is poor value. For the cost you pay out of pocket, I can find you conventional imaging centers that will charge the same (or less!) for fully diagnostic images and a fully diagnostic report. And they will give you the images on disk (or a link to a portal) right there.
If you want to be screened and have the cash to pay for it, go right ahead! Knowledge (can be) power! With the caveat that imaging is step 1 and you may need further work up. Don’t go to the Theranos of imaging; go some place truly diagnostic.
Agree that Prenuvo are crazy expensive compared to Mirovita ( https://mirovita.com) and others who offer the exact same service for significantly less.
See fights over: mammography, serum PSA, Lung cancer screening, colonoscopy, etc.
I wouldn’t say most frontline doctors are personally against screening, but they hate fighting with insurance companies over this stuff, and would rather not deal with it.
This Mirovita (https://mirovita.com) one looks decent. Anyone try it out yet?
I was referring to random small businesses like this guy. I have seen the images from his centers; they are excellent.
https://www.firstlookmri.com/
Mirovita is a similar price point.
I've had luck with just calling once a week or sending nastygrams asking why my claims are still denied, they usually say "oh that didn't go through I'll manually process that" and approve a few more each time. Incompetence vs maliciousness etc.
Looking at financial reports of the major health insurance stocks in the US makes me wonder if they are really "incompetence".
Take United HealthCare (UNH) for example, they reported $112.7 billion and net income of $4.11 billion in Q3/2026. That's great amount of revenue and profits to have enough resources to not stay "incompetence". It's not a coincidence.
Three years ago, of necessity I became a big-time consumer of healthcare[1] and I can't believe I just been lucky that nearly all my doctors seemed reasonable and effectively treated me. Of the dozen or so doctors I dealt with only one left me with a bad feeling.
[1] Stage 4 renal cancer, successfully treated with immunotherapy and surgery at Perlmutter Cancer Center in NYC.
I assume so. My experience is pretty similar to yours.
One tip I don’t see on this list: if you have cancer, always bring someone with you to medical appointments. They can ask questions, take notes, and support you emotionally. It’s hard to take everything in when all you can think about is the fact that you have cancer.
I cannot recommend this enough, including writing down almost every day about symptoms and progress. I didn't have cancer, something else, but it was very valuable to be able to go back and see exactly how long time a symptom has been present and when it disappeared.
Doctors also seem to react well to being able to be precise in descriptions of what happened when.
Doc: "Do you have any other medical conditions besides your {red eye,stomach ache,itchy foot}?"
Patient: "No."
Doc: "Are you taking any meds?"
Patient: "Yes I am currently on chemotherapy for my cancer."
Doc: "Okay... so you have cancer?"
Patient: "Yes I have lung cancer."
They do. In my experience they're usually pleasantly surprised when you have dates and timelines rather than "oh I don't know, about a year ago?"
That being said the reaction differs if you offer a self diagnosis (assisted by google or chatgpt) rather than just symptoms. There will not be pleasantness. It's a toss up between a dismissive "yeah maybe" and "uh uh, did google tell you this?" Many doctors will 100% listen and consider what you say, but in my long life I've learned that offering a self diagnosis must be done very tactfully.
On one hand it's understandable, us as programmers don't enjoy having a nocoder arrive with "yeah so chatgpt says this is no good" and having to explain to them why they're wrong. On the other hand modern patients do their own research before consulting, so it's worth at least considering what's being said.
I did resort to "self-diagnosis" once, though: for R-CPD (no-burp syndrome). Most doctors simply don't know this condition exists. I brought it up with my GP (whose referral I needed to see a specialist in Ontario), prepared for some pushback, but was pleasantly surprised that he did some brief research and then helped me forward.
Then again, I may have been lucky. I still hear stories of doctors who are less than cooperative when patients bring them "self-diagnoses", even for something as open-and-shut as R-CPD. But if most of those "diagnoses" are BS, then I can empathize with the docs, too.
It does not always work, but a lot of doctors in my experience take some time to kindly explain why they think the other possibilities I'm concerned about are unlikely, and sometimes my questions actually prompt them to add some additional investigations.
One bad side effect of coming in with your own self-diagnosis is sometimes they will index on that and stop considering other possibilities they would have suggested if you hadn't primed them with a diagnosis.
And I pull records from my chart etc using the data export periodically and use an importer.
If I’m being honest, it’s more that it scratches my itch to document than that it is useful.
You can do whatevvr you want with the audio files - have them transcribe them, summarize them, hand them to an agent, upload them to your cloud, whatever.
The standby and talk time is really great on both the pins and the credit card sized versions.
I have a lot of friends that now use them with elderly parents/their own medical care when they need to really be able to have something automatically record/transcribe the visits.
1. If you want something totally open source: https://github.com/RemiPelloux/OpenPlod
Local-first Plaud Note Pro recording vault, transcription, and Markdown workspace. Which sounds like what you want.
2. the Plaud SDK will let you pull from the device and send it wherever you want without touching their servers.
3. You can also use the mobile app, disable cloud sync, and export each audio file as mp3/wav to your phone/tablet/whatever if you don't want to use #1 or #2.
You can have it upload to your private cloud without doing any of these, but it still transits their servers first i believe, which it sounds like you are trying to avoid
In the USA, providers are openly hostile to being recorded. You had better ask at the front desk if you can record anything first. They will tell you no.
If you covertly record, then they have every right to refuse you service and eject you from the exam room.
Do not ever record anything independently with your provider. They are absolutely hostile to this and there is no getting around it.
They will tell you that it is a violation of HIPAA. It is actually a violation of CYA.
Providers do not appreciate having any independent record of one-on-ones that they cannot repudiate themselves. If they didn't document it, it didn't happen. Don't record providers.
This is done all the time, and is quite common, particularly when care is shared between multiple people or people are elderly
16% of all appointments are recorded by patients, and the number is increasing all the time. It's up like 20-30% year over year. Only 3% of those recorded are done covertly.
Basically all medical associations have issued guidance on this and the guidance is not "kick people out of the office"
I have never once had a provider become hostile or care. Nor has anyone I know. People record with phones, dial people in, etc.
This is across like 10+ states, tons of conditions, ages, and hundreds of people.
While you may have had a different experience, i dont' think i would go with "don't ever do this". It's happening in almost 1 in 5 appointments, and increasing all the time.
https://m.xkcd.com/2173/
I have interacted over the phone with two major clinic systems who have busied out my line and hung up on me, just because I activated Call Recording on my Pixel.
You try it. Telephone your clinic/hospital and activate Call Recording, and see if they will still even stay on the line with you. Notify the human who answers, and see what happens.
This was not merely a human decision; it was the clinics' automated system countermeasures vs. recording a simple, normal phone call.
I was also reprimanded for recording at my psychiatrist's clinic. Then they posted signs that said that all recording, photos and videos are strictly prohibited.
When I asked at an independent Urgent Care facility, the front desk flatly refused. She insisted it was a HIPAA violation. It is not.
They also do that if you show them pictures of your poop when you have a bowel thing going on.
Care for your loved one and spend time with them. Don't skip medial appointments and get checked regularly. Learn doing self assessments and do them regularly.
My only submission will be to consider India, which is fast becoming a hub for medical tourism. You can get any test you want and meet specialists in hours, not even days.
If this is maligning the system I'd love to know. They said faced with excess costs to go private in Oz for a condition or fly home and get treated in China, they'd stay here. The net cost might well be similar.
-'call this number of hospital x to schedule an appointment with Dr y'. (check. Appointment in 5 weeks. Automatically reschedules the task every day to ask if there is cancelation to make it sooner).
- 'you will get your 1st opinion today. In the appointment, get your test results so we can get a 2nd opinion later.'
The app would have built in ai who knows and references 'the standard of care', and knows where to schedule each treatment anywhere in the world.
1) Doctors are human and make mistakes or overlook things all the time, so you yourself are ultimately responsible for double checking every result and lab test, following up with questions and getting second opinions when something doesn't add up or make sense. It can be as silly as a radiologist looking for changes between 2 identical images vs comparing with the previous scan.
2) Rare presentations happen. Just because some symptoms are a low probability occurrence, they still happen to somebody, so don't let anything be dismissed due to odds without further analysis or imaging.
3) Palliative care can have a major impact on the quality of life when there's nothing else to do. Nurses were more helpful for figuring out what to ask for than doctors.
Not cancer, but after over twenty years of anti-depressants of all shapes and sizes my latest psychiatrist recommended one of genetic tests and it turns out I’m missing some enzyme that is supposedly needed for the meds to work.
Bitter sweet to find these things out so late in life, but better late than never.
In this context, though, we're talking about measuring the actual cancer (including the tumor's mutations) to determine what therapies it is likely to be responsive to.
e.g. this: https://www.cancer.gov/about-cancer/treatment/types/biomarke... not this: https://www.cancer.gov/about-cancer/causes-prevention/geneti...
I'm just responding to:
"""Genetic tests for cancer are a different kind of genetic test. They test the tumor itself for mutations that are present only in the tumor, not in the rest of the body."""
Strictly speaking, BRCA is a genetic test for cancer (even if it's only a "risk factor"), and it's done on the regular genome, not on the cancer.
(None of this is important or really relevant)
> You may need to push for comprehensive genetic testing. Some doctors were weird about this and didn’t order it promptly, even after telling me they would. My surgeon, who told me he’d get it done, eventually referred me out to an oncologist. This caused a multi-month delay to getting genetic results, since the first results were done on the surgery tumor, not the biopsy tumor.
The quote further upthread lost the last bit, which is pretty clearly talking about tumor sequencing.
> Strictly speaking, BRCA is a genetic test for cancer (even if it's only a "risk factor"), and it's done on the regular genome, not on the cancer.
Yes... that's why I clarified that I believed we/the article were talking about tumor testing and not BRCA (which is mentioned in the second link I gave).
For the vast majority of cancer patients, generic testing means somatic testing for tumor markers.
We asked a couple MD friends and their first suggestions was to actually get a second opinion at Anderson (Houston) but it wasn't logistically feasible.
As someone not from America. Damn.., I can't imagine needing to use vacation days for that kind of treatment.
This is good advice for pretty much everything actually. It could be summarized in "write things down". Even if you don’t feed that to an AI, it’s always good to keep a record.
It begins with "For the millions of uninsured Americans out there..."
My partner died of a very rare and aggressive cancer at 32 last year.
Apart from all the technical stuff, my suggestion is to still enjoy the time you have and treat the others as you as nice as you can, and to still keep the good vibes and jokes going. A smile can help more than you think.
We all have limited time on Earth, and at any point in our lives we should be happy with the life we lived so far and ok with the idea that we might die at any point, so if we should always be happy with what we did and have no regrets.
What people surprisingly rarely understand about cancer, is that it's rarely a one-time thing. You don't really "cure" cancer. It's really a battle, often a lifetime one, that takes a high toll on the person but also on the people around. Hopefully new technology can drastically ease this battle, and I think it already did quite well.
It's really important to have a good support system, and also not rely on just one or two people for help that might get burned out if the battle lasts years. It takes a village to heal and support someone with cancer, and having this support makes the journey so much more manageable.
Medical oncology is definitely not an attractive specialty.
High stress, poor pay, fraught conversations with often aggressive family members.
Would you want to be the person who is being abused by all the commenters here ?
Neither would they.
That is why ROAD ( Radiology, Opthalmology, Anaesthetics and Dermatology) is so popular.
Also why most doctors kids go into non-medical fields.
My colleagues kids are doing hedge funds, big law, M&A and unicorn billion dollar AI startups, not high stress, poor pay medicine.
https://johnnyreilly.github.io/reillys-on-tour/rough-road-ah...
Yes to this. I had a thyroid nodule which I saw many doctors and had multiple tests on. At each step of the process I conferred with AI, and each time it assured me not to be concerned, it's not cancer, etc. The doctors were less certain. It turned out to be cancer. I'm OK today! But something to keep in mind.
Quite a lot of serious medical things start out seeming not serious, including a lot of cancers. Basically once an ailment seems unusual, like “hmm this is not going away like usual,” start writing down every time, date, and detail you can remember back to when it started. Then keep that current.
Doing this will help the accuracy of your treatment.
There are also a bunch of implicit “timers” in standards of care, like take OTC drugs and rest for a week, then come back if it is still not resolved. Having a detailed precise timeline documented can help skip through those. The doctor may be able to look at the detail and say “ok you’ve already tried the easy fixes, let’s dig deeper.”
If we healthcare customers realized that our data is really the future of medicine, and we had a way to give each individual their own records (like some encrypted block chain or something) that they can hand out access to their healthcare professionals to (instead of the other way round), we could get a lot further in detection diagnosis and treatment
The spice shaker had like 6 spices, and really helped the hospital food. The cable and tape helped me plug in my laptop and switch without having to get up during chemo which was kind of painful.
Always get a second or third opinion even if you have no doubt in your current provider.
Anecdotal of course but left an extremely bad taste in my mouth.
A friend's insurance didn't have MD Anderson in network and he ended up at Memorial Hermann, the staff of which flips back and forth between there and MD Anderson like Bing and Google used to because they overlap physically in the Texas medical district. The difference in his words was that MD Anderson was on top of everything and managed the entire experience while he had to rely on his background as a small business owner to manage his treatment himself at Memorial Hermann.
Our friend group went through the support-mode version of this this year and much of the advice rings true.
To add, a giant shared document that the group of friends had access to in order to take notes. Findings, theories, doctor statements will be shared when the patient isn't in a great place to be taking notes.
And for anyone reading this that might have someone facing cancer in their lives, go make a nuisance of yourself being present - feel empowered to spend a bit more time than you might initially think is necessary/helpful with them. Facing this stuff alone is when it is at its hardest.
I was hospitalised (not cancer) and completely zoinked out of my mind due to sleep deprivation, constant blood loss and being in pain 24/7. People did visit, but I guess they just thought... I have things under control? I wish they had talked to the doctors and asked more questions. In the end I came out of it fine, but I probably would have gotten a better result with someone advocating for me.
Please go and be a nuisance. As someone with a clear head you will likely be able to understand the topic better, from a more neutral standpoint, and potentially push for the best possible treatment.
This applies to all surgery.
The medical system uses coarse statistics, like "did the condition go away" and "did the patient survive".
"The patient went through a devastatingly painful 9 months and slowly recovered over the course of years to work towards a small improvement in the original symptom" may be classified as a success.
And don't forget that many actors in the system are financially incentivized to recommend interventions.
it's also important to remember that modern medicine, as wonderful as it is, is still limited. your particular type may have x lines of treatment, the cancer eventually mutates, your body can't handle the latter / harsher treatments, and...that's it.
Definitely get the second opinion, examine all the options, find the open minded doctor, potentially try an experimental treatment. That's all good. But there's a certain piece you or anyone can't control, and it's worth sitting with that too. That no matter what you might do, you might still end up at the end much sooner than you want to. My MIL's 5 year prognosis was awful, and she passed between 3 & 4 years.
But there's a CHANCE you might not and you might beat it, or at least live longer than expected. And even if you don't, you will pass knowing you did everything you reasonably could given the state of medicine today. Both of those are worth fighting for.
And make sure you have somebody around that will pay attention to changes in symptoms. My MIL almost died earlier this year because everyone thought her declining symptoms were the cancer. Turns out it was just too much calcium, once they treated she got a few extra months. She likely would've lived longer had they all caught it earlier.
I had testicular cancer 2017, and this is my main takeaway. You have to sell your disease to the doctor. I had a lump deep within my teaticle and was ignored by two doctors. The third one finally ordered an ultrasound. From there it was quick — I live in Sweden, high taxes but we cure people of cancer for around $100.
Cancer sucks and leaves you paranoid after. Most recently I thought I had a tumour in my mouth, and even got the AI reluctantly agree with me. Proved to be a condition called mandibular tori that somewhere along the line of 40% of population has (but the little AI failed to mention lol).
In case you wonder, yes, I only have one testicle, and yes they removed my boy-producing testicle; I’ve had two wonderful smol girls since.
I had testicular cancer a decade ago (in Ireland). I found a lump, went to my GP, had a scan 2 days later, and surgery 12 later. Followed by chemo and a RPNLD as was needed.
I didn’t need to chase any doctors, I trusted every doctor I met (had I had AI then I wouldn’t have wasted time with them).
I got a second opinion, because why not, but they agreed with my onc.
Is this some very US coded list that isn’t relevant to my experiences in Ireland?
ps. I’m not sure why genetic testing is suggested here?
I would be shocked if it did not go pretty much exactly the same in the US. Testicular cancer diagnosis is really well understood and straightforward.
The moral of my personal story in this context is probably somewhere near the intersection of "not all cancers are the same", "you can always find an anecdote which suggests something", and "luck is a factor in life".
If I were to go through it again I'd still probably get a second opinion and go to a better place even if it was a straightforward type though because why not if it's covered the same in the end.
Note to everyone reading your comment:
This is a typical psychological response, a deep need to trust the given system you're in, especially when it comes to serious medical issues.
This will lead to suboptimal outcomes and/or severely harm you in most circumstances. The people in these systems are just people, they make mistakes, they have their own personal issues, they have their own interests. The people who designed these systems are just people as well, they make mistakes, the systems are flawed, the system itself has its own interests and logic.
You need to be your own advocate, do your own research, not take what people say or do as gospel.
And yes genetic testing is extremely valuable in modern cancer care, a good oncologist will do this immediately.
I think the first genes identified that had an influence on cancer prevalence were breast cancer genes BRCA1 & BRCA2. These genes also have an influence on men getting prostate cancer.
This article explains more:
https://www.cancer.gov/about-cancer/causes-prevention/geneti...
Lots of people surely have these genes but no breast cancer, and many or even most cases of breast cancer don't involve this genetic variant.
A couple of reasons (off the top of my head). Depending on the type of cancer, there are certain genetic markers that indicate how it might progress + impact the overall risk. This is something you might want to communicate to other biological family members. Your genetics also can impact what treatments you respond the best to, and knowing ahead of time lets you start on the things that are most effective for your body in particular.
It's a very extreme form of individualism in combination with capitalism. Then we have the worship of corporations
The best way to operate under that is how you should expect everyone else to: strongly advocate for yourself, because even hospitals in cases like this will be looking after themselves first
It'll ruffle some feathers because it is a gross generalization that does not fit what most of us experience. Confirmation bias is really a thing.
Because we need them.
A very significant percentage of my Circle has had (or has) cancer.
> No one cares more about your case than you, so take control and send lots of follow-ups.
Although the advice regards cancer, there is no time-sensitive ailment for which you shouldn't do this.
Never wait around - call, hustle, be polite, and (don't let on but) always assume absolute incompetence at every step (best to be pleasantly surprised when things are handled well, than waste weeks/months because of an administrative screw up or because your case fell between the cracks).
In 2021/2022, I did Google Drive, so I could see it on my phone and other machines.
If this happened now (knock wood) it would be a private GH repo with every test, every image, every receipt, every appointment, every note. Then skills to ingest/OCR/normalize them all into a common format of MD. Point a Claude Code project at it, and fuzzy search it with open questions like "why did Dr. Smith say this" etc.
Not a doctor, that said: beside the surgical operations and medicines, one thing I'd consider adding is the ketogenic diet. Research medical studies and emerging evidence, pro/cons on the internet and seriously consider switching to it.
Depending on your conditions a state of kethosis might prove demanding to your body, but even staying very near to it might probably prove useful.
1. Find patient organizations/support groups for your cancer. They often have excellent collections of info, from some of the sources covered in the article, and can help with finding the right doctor, or the right place to get a second opinion, or financial assistance. Some also list recruiting clinical trials.
2. Try and find local support groups. Other patients are often going to give you way better ideas and suggestions that you never thought of. It also helps enormously to have other folks going through similar journeys to talk to.
3. If you can afford it, Sloan Kettering does a remote consultation, where your primary oncologist can also be present, and they review all tests, suggest new ones, go over the treatment plan, etc. They do this in some international markets too. Pricey AF, but worth it for complex cases.
You can plan appointment notes with trusted resources, record and summarise the appointment and follow up with any questions or research you have after. You can also journal which automatically extracts structured information on all your symptoms, side effects, medications etc.
Healthcare systems everywhere are overwhelmed, and inflicting unnecessary hurdles just to get rid of/delay people, who don't 'fight for their right'. You have to put in the effort, the system will not (even if it would save money in aggregate by moving issues from expensive urgent care to cheap prevention).
I can't imagine how important it is to practice this when you deal with a terminal illness that grows over time. And how easy it might be to forget this, because you're exhausted.
If so, let the docs know what you had and that it typically spreads to the area you're now experiencing a change in, if they're not already considering it.
I suggested getting a second opinion from MD Anderson, KU, etc., on the surgery but I ultimately couldn't contend with the sense of urgency to get this thing started and rolling. It's going to be another rough year.
With absolutely zero due respect - Fuck Cancer.
If you think something’s wrong, get it diagnosed asap. Everything depends on cancer type, but with some, a few months in either direction can be the difference between no chemo at all and months of chemo. Biting that bullet earlier can drastically improve what’s going to be a terrible experience.
YMMV.
- You are the least-constrained team member in your healthcare: At an appointment, your doctors only get to spend ~30 min on your problem and it's unrealistic to expect them to be as deeply involved as you are on your healthcare. Yeah, you yourself can spend days or even weeks researching you health problems and planning your healthcare.
- Research your health problems: you don't need to be an expert to read about your health problem, learn the basic anatomy involved and the high and mid-level details of the surgery or treatment. You'll have to look up a lot of terms, but it's not that bad and the articles aren't that difficult to understand at a high-level.
- You are also the manager of your healthcare: Planning and seeing the big picture is critical. You can optimize a lot of the planning of appointments, exams and surgeries buy thoughtful planning. And, you can definitely catch a lot of opportunties and mistakes in decisions that are made. Just like in a tech project, a couple of good random ideas can lead you to some fantastic outcomes.
There are many more, but yeah, working with the healthcare system is an skill that can be studied and learned. Really useful.
1) Very old injuries, almost all when I was a child or teen playing sports or doing reckless things, which caused neuralgia (nerve pain). Two were on the head (one from skiing, one from playing baseball and getting hit with a bat on the head by accident). Another on the tailbone that am focusing on now
2) Very bad posture related to these injuries - had horrible posture as a teen, and thinking back, this is very probably due to my tailbone pain. It caused a ton of pain when sitting and also caused me to twist up my pelvis and hips to avoid it. This terrible twisting on top of the other pain destroyed my posture and clenched up my neck, and for the past 30 years, have been trying to undo those postural problems and muscle clenching. Have done a lot of physical therapy and exercises, but it's much better now (although, it's still a work in progress and will probably never be finished).
This advice can be applied to most things in the life. Expecting the machine in any context to take care of you will likely leave you disappointed.
40 years ago, Dad got colon cancer. He was a Jehovah Witness, they prohibit blood transfusions. He looked hard for a doctor who was willing to do surgery without blood, and found one. Surgery was successful, he was completely cured. Years later, the official medical recommendation for when to do blood transfusions dropped to use blood in less cases, which shows better outcomes. This was interpreted in his mind as "JWs saved my life, I owe my life to this cult", so he became a radical JW, which destroyed our family.
I relate and understand this better than I wish I did. I watched my mom fight so hard, going through chemotherapy, but eventually succumbing to Ovarian cancer in 2011.
It’s a heavy burden, even as few families are unharmed by cancer.
Personally what I find burdening is the access, and cycling through immunotherapies and targeted therapies. PET/MRI screenings often. Recently had a lesion punched from my primary forearm site’s scar-bed requiring three sutures.
AIM at melanoma, an Apple Watch, Apple Health, Claude, Google Calendar, Granola, NCCN, and Outcomes4U, have been incredibly helpful.
Fuck cancer. Never stop fighting.
I have a GoFundMe, but I’m unsure if it’s permissible.
The stats are pretty staggering. Cancer has a 80% survival rate IF you catch it at stage 1. By the time you get to stage 4 your odds drop to 20%. Despite everyone agreeing that early detection is the key, most doctors will discourage preventative screenings because of fear of "causing anxiety" because of the high false positive rate. You're supposed to just wait until you start pissing blood or something.
But you know what's worse than a little anxiety? Getting cancer and not finding out in time.
The best thing you can do is go sign up for a preventative screening with someone like Prenuvo or Mirovita. The price for elective MRIs has fallen drastically over the last few years. I just checked and right now can get a full body MRI with Mirovita for less than a thousand bucks.
I can't think of a better investment for your health and peace of mind.
As much as you need the health care system to make decisions and act, you need to do the same. And there are some kinds of cancer where talking about it is embarrassing, or fear of treatment keeps the patient from proceeding - not the doctor.
Prostate cancer detection for example has it's basic roots in the PSA test (easy enough), but also DRE (Digital Rectal Exam). As things go for exams, it's not many people's favorites and some will put it off.
Next up, say you have higher PSA. You probably will get sent off for a biopsy. Guess where they have to go to get core samples? There are a few routes, but none of them are what one might call fun at all.
So just to get diagnosed, you're going to find people who will put it off or not do it simply because they have anxiety or otherwise are uncomfortable about it.
Then there's the outcomes of the treatments - of which there are many types of treatments. The two big negatives of treatment can be incontinence and erectile dysfunction. That and your penis might be shorter post surgery if you go that route.
What that does is get people who need treatment going from doctor to doctor to find the one that tells them what they want to hear (no side effects). It's paralysis by analysis combined with fear of the not necessarily guaranteed side effects.
But there is one side effect if you do nothing for long enough - you'll die.
So do something - don't let the blocker to treatment be you.
Not that the finger test is not used so much anymore because it’s very poor at detecting cancer for much of the prostate.
I went thru all this a year ago and the MRI was 95% certain I had cancer! Turns out the biopsy showed I didn’t have cancer but another benign condition that was a rare complication of a immunotherapy treatment for bladder cancer that I did have…which is a different story.
On the subject of research: The standard of care changes over time for a reason. Older studies, based on older treatment protocols, will have worse survival rates, and including them in an average will make things seem worse than they are. It's hard to do an apples-to-apples comparison with chemotherapy protocols from before current biologics like monoclonal antibodies existed.
> AIs may downplay the seriousness of things. I was chatting with various models and most pushed me in the direction of “you don’t have cancer” for a while. Just something to note.
I wonder if this is a deliberate prompting to counteract the old WebMD flaw of "Flulike symptoms? You have a week to live" because it takes actual context to understand that a lot of things have flulike symptoms, but for most people, most of the time, in the absence of other evidence, they're caused by the flu.
> You may need to push for comprehensive genetic testing. Some doctors were weird about this and didn’t order it promptly, even after telling me they would. My surgeon, who told me he’d get it done, eventually referred me out to an oncologist. This caused a multi-month delay to getting genetic results, since the first results were done on the surgery tumor, not the biopsy tumor. No one cares more about your case than you, so take control and send lots of follow-ups.
Also, genetic testing is not necessarily going to reveal anything. I had cancer, I got genetic testing, I explicitly opted for the "expanded" version which I was warned might give me results that sounded scary but were inconclusive based on current knowledge and... I got a Variant of Unknown Concern on one gene and that was it. Nobody knows what causes the kind of cancer I had (PMBCL) and the test left us none the wiser.
I’ve known a few people who were diagnosed with cancer since then and gave them the recommendation but, alarmingly, they weren’t open to giving up meat at all. Horrible chemo and drugs? Ok. No steak? No.
Visited the MD Anderson cancer hospital in Houston with one friend and was hoping their food court had vegan or whole food options. Nope. Only pre-packaged junk food for me. It’s surreal watching people serve up processed meat and red meat to people battling cancer inside the worlds premiere cancer hospital. I feel like I’m in the twilight zone. I could go full nihilist and say that preventing cancer, or combatting it with cheap food found at every supermarket, would put them out of business. Something to think on.
Edit: totally forgot the scene when we first rolled up, with nurses, doctors and staff outside the hospital smoking and vaping. They work at a cancer hospital. What is happening?
https://www.forksoverknives.com/the-film/
Oh, you mean the findings of the worlds largest study on nutrition?
But yeah, keep eating at Arby’s. That’ll help.
- If insurance refuses to cover something, check your insurance site for something called an explanation of benefits for that charge, which should give a clear reason why it was denied. Sometimes though (way more often than it should be) the reason is completely wrong, or vague, or nonexistent, or is just hard to understand, in which case call the insurance and harass them daily until they either pay for it or give you a sane explanation.
- If you go through all of that and they still won't pay, get in contact with whoever made the charge (hospital, lab, doctor, etc), and tell them that your insurance refused to cover it, and that you need to negotiate the price down. This works sometimes. Even when it doesn't work, they can usually get you on some sort of payment plan so that your checking account doesn't go immediately dry.
- In general, get used to spending all your time on the phone calling insurance and doctors trying to get people to take you seriously. This is problematic obviously because you're SICK so generally you're not exactly in a state where you can do that. If you have any friends or family, see if you can enlist them to call people for you. Also, if you can get access to a social worker, sometimes they will be able to help you with calling insurance places and that kind of stuff. If you're inpatient, just ask your nurse for a social worker - at all the hospitals I was in, they had social workers on call for stuff like that.
- Write down on your phone somewhere a bullet list of all of your symptoms, treatments, diagnosis (or attempted diagnoses), etc. You will constantly (and I mean CONSTANTLY) have doctors entering your room who have not even GLANCED at your chart, who have absolutely no idea what's going on, and who will seemingly make all of their decisions based on your answer to the question "so what's going on". So make sure you have a good answer to that, which makes it clear to them that you have a serious problem that is worth taking seriously.
- Adding to that, push each new doctor that comes in for an actual PLAN. Your doctors likely WILL NOT communicate and plan with each other -- treat yourself as the project manager. You are the go-between for everybody. If the neurologist says something, then next time you see the oncologist, make sure they know that the neurologist said that. It is unfortunately your responsibility to lead the team of doctors that cares for you, at least in my experience at a few different hospitals.
- If you have pain, don't be afraid to ask for pain meds, because unless you ask for them, they won't be given to you. Even if you're writhing and moaning in pain, you will either be ignored or given extra-strength tylenol. You have to constantly advocate for yourself and be persistent about getting actual pain medication. Even when they do give you opiates, they will try to give you the smallest possible oral dose unless you specifically tell them "I need this much of this kind, and I need it IV, otherwise it doesn't help enough".
- This includes learning how to use the 0-10 pain scale. If you're like me, your instinct will be to always undershoot your pain number, because yes this is excruciating but I'm sure people who've had full body chemical burns feel far worse than this, so maybe in the grand scheme of things what I'm feeling is just a 5 -- don't do that. The 0-10 pain scale, in practice, is actually a metric of "how much do I need pain medication right now". In my experience, anything from 0-5, even if it really hurts, will not get you real pain medication. 6-7 is like "wow this hurts, it would be nice to get something for the pain", and 8+ is "this is excruciating, I need pain medication right now".
Anyways, good article and I agree with everything there, especially the part about going to a major cancer center instead of your local hospital whenever possible. Just wanted to add some more thoughts from my own experience.
I am confused. What does "comprehensive genetic testing" mean here?
Note: I understand perfectly fine the idea of testing. I fail to see why this is required here.
For instance, the blog author differs between surgery tumor and biopsy tumor. However had, a tumor is a clone, by definition; see Henrietta Lacks cells (https://en.wikipedia.org/wiki/Henrietta_Lacks).
I do not understand his distinction here. I don't think the distinction makes any logical sense either.
> Use AI to help you figure out what to pick based on your case.
I fail to see the point here either.
> The rest of the HN comments are worth reading too.
I am not sure about that either.
I understand the issue of cancer being different, and some can kill people quickly (Henrietta did not reach an old age), but I had small benign tumors removed surgically (fibroma of the fatty underskin). No extra treatment was necessary after that (this happened about 15 years ago or so). I understand that benign tumors are very different from metastasizing cancers; my point is more that I don't really agree with the statements made there in general. I think that surgery is a perfectly fine way for many cancers/tumors. It also is potentially very risky and can come in with huge problems. In my case, though, chopping off the small fibromas was the right choice. Unfortunately cancer will hat many people, also differently, so one may never be secure: https://www.cancer.org/cancer/risk-prevention/understanding-...
Risk of getting any type of cancer may be up to 40%; dying may be in between 13-17%, higher for older people. So I am not at all suggesting cancer is harmless at all, but at the same time I would not use that recipe listed on the author's blog entry either. I think the best qualitative assessment I could do is to say "it depends"; and to not rely on AI either. IMO most people should read up on things for a while, does not have to take long, say a week or two of slow, concentrated reading in a non-emotional but objective manner. Then you may understand a lot more. Cancer biology is, for the most part, actually cytology/cell biology. (The cancer chapter in the book molecular biology of the cell is also good; I think even non-scientists will understand most of that via slow reading too. Why does everyone want to succumb to AI here? I don't understand it.)
Coming to peace with that uncertainty is the only way you can survive it.
And the guys advice to get a second opinion is a false confidence. The diagnostics are primitive and low signal, and they all share the same NCCN guidelines for therapies. Peace of mind has value, but you’re not going to receive any revelations.
In the past, misguided research on the internet would often yield the exact opposite. The most innocuous set of symptoms? Oh you have a super rare disease that is found in SE Asia (you lived mostly in suburban America. No travel). Or, you have cancer or lupus.
What's the difference for a physician today vs. 30 years ago? Among other things, today's physicians struggle because they're being crushed: continuously squeezed by the financialization of their hospital/practice, carrying larger debt, more time spent fighting the insurance machine just to get basic treatments approved. On top of all of that, they are less respected in general and often face outright hostility from patients... all while being paid relatively less than their predecessors.
The comparison rankles, obviously.
To your point, it's hard to imagine any human dealing with the conditions a lot of doctors face then showing up the way we want them to all day, every day. But how much suffering are patients supposed to absorb to subsidize the stress budget of their doctors?
I wouldn't go as far as drawing an analogy here, but it reminds me of debates surrounding police violence in high stress situations. Is there a higher standard when you're accountable for other peoples' lives? Are you off the hook or is it on you, and not the people you serve, to fight systemic and situational problems that make it hard for you to do your job well?
After what i've been through, I think it's good advice for everyone.
Source: Just a number of issues that ultimately led to outcomes being worse than they could have been otherwise:
"You're too young for cancer (at 25)."
Had cancer in my bowels. Caught very early as I kept pushing and pushing (heh, pushing).
"Your body hurts and you're having problems working because you're stressed from work"
Reality, incomplete spinal cord injury from severe cervical myelopathy. A wrong movement, fall etc could have seen me in a wheelchair at basically any moment. As it is I live with life long side effects I may not have needed too, had someone done the needful earlier.
I can literally walk into the hospital here, and a doctor/oncologist will become available within a short while.
The shortest wait was 15 minutes and the longest we waited was 3 hours. This was consistent across the 18 months of treatment.
We only had to schedule chemo, which would start within 5 minutes of prep.
I do not expect to be meaningfully employed with a group insurance plan ever again. Guess I'm hosed if it happens to me.
Also...
> You may need to push for comprehensive genetic testing.
Why?Cancer is not a condition that develops due to genes you inerited, after all, right? And also - for any cancer? Just some of them?
Hey, could you share one of these chats with the "Share chat" function? This might be of interest to a lot of law students.
Just by being posted here on hn, it will probably be discoverable by anyone that searches for cases where an LLM gave damaging medical advice.
But there’s also the matter of medical practice without a license, and unregulated (no fda approval) medical devices.
Here's a synthetic conversation I simulated with Chatgpt
https://chatgpt.com/share/6ad142c6-40a8-83e8-b522-daafb2738b...
Chatgpt seems pretty comfortable triaging without any legal waivers or disclaimers about not being a doctor. That said it's possible it did so for OP, I don't know
AI slop.
This is good advice for any non simple medical problem. Because while you may not have the book knowledge and definitely not the clinical experience you probably can tell when your care is deviating from standard care.
Her cancer was the exact same kind, down to every detail as the one which was tested in one of the most successful cancer trials in history; 100% success rate of full recovery with no surgery. Also, her specific genetic profile was an exact match for about half of participants in that trial. Essentially she was a textbook perfect candidate for immunotherapy so it's mind-boggling that it wasn't the first recommended option.
Note untested medicine is untested.
> PNC-27 is an anti-cancer peptide that in small in-vitro studies has been shown to induce tumor cell necrosis.
Oh the privilege.