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.
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 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.
> 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.
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.
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 times. 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.
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 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.)
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
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.
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.
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.
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.
> 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'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.
"""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 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.
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.
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.
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
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.
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 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.
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.
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.
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.
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.
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.
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.
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.
> 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.
> 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.
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.
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.
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.
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.
> 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.
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.
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.
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 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.
> 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).
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.
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'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 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 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
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.
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
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.
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.
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).
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.
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.
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.
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.
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.
> 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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
"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.
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.
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.
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.
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 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.
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 times. 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.
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.
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.
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.
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.
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.
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.)
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
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.
More common specialists you can just book with. I got an appointment with a cardiologist with no fuss.
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.
> 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?
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.
"""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.
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.
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.
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.
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
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.
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.
Canada introduced MAID for this reason.
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.
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.
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.
If Texas isn't for you, Memorial Sloan-Kettering Cancer Center in NYC is the next best bet AFAIK.
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.
jakeseliger.com
bessstillman.substack.com
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.
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.
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.
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 should pressure test anything an AI says with your doctors, and anything a doctor says with AI.
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.
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.
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.
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.
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.
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.
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.
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).
Anecdotal of course but left an extremely bad taste in my mouth.
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?
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 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.
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
- 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.
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.
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.
- 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 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.
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.
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?
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.
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.
Oh the privilege.
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.