Comment by stochastician
4 days ago
The second opinion advice is great, and what I tell everyone I know who gets cancer.
My mom was diagnosed with stage 1 cancer in 2006 in Idaho. I was a PhD student at MIT at the time and a friend in lab helped me get an appointment at Dana-Farber. I thought it was probably overkill (it was a common cancer) but we did it anyway. They said everything in Idaho was standard of care but suggested one extra test, which Idaho team then reluctantly did, which revealed distant metastasis (stage 4! ), dramatically changing her treatment trajectory. She lived another 15 years (I miss you Mom).
Asking for a second opinion sucks. A lot of us are preconditioned from birth to trust our clinicians. But you're going on a journey and your life (or the life of your loved one) is on the line. Insurance often covers it. Your doctor will NOT be offended.
Think of it this way : if you were deploying code to the mars rover, and your colleague asked to do a code review before you pushed go, would you be offended? This is even more important than that.
The second opinion thing has something I learned along the way. Get it BEFORE you have a treatment plan from the initial diagnosis. We got two second opinions (one for her first diagnosis and one for her recurrence) for my wife's ovarian cancer from Cleveland Clinic and MSK and in both cases the doctors would not advise/override the original doctor's treatment plan.
They were complete no-ops and a waste of time. Faced with that same situation today I would simply lie about whether or not a treatment plan was put into place.
Second bit of advice is to try as best you can to go into clinical trials with an understanding of the landscape of disqualifying treatments. Any immunotherapy treatment, for example, will disqualify you from nearly all subsequent clinical trials for immunotherapy.
Lastly the thing I would recommend for partners of loved ones in the crucible, don't get too distracted by trying to 'save the patient' that you miss opportunities stay connected with them in the process. It's not your responsibility to save their life, as much as it might feel that way when you're in the thick of it.
> Second bit of advice is to try as best you can to go into clinical trials with an understanding of the landscape of disqualifying treatments. Any immunotherapy treatment, for example, will disqualify you from nearly all subsequent clinical trials for immunotherapy.
While using this information for comparing clinical trials is fine, I want to emphasize that it would be phenomenally short-sighted to skip first-line approved immunotherapy in order to preserve the option for some random trial later on.
I'm not sure if you're actually suggesting this, but immunotherapies are some of the best cancer therapeutics that exist, so skipping approved drugs for future experiments is just a bad idea.
Well pointed out and I completely agree with your take.
In our case it was a clinical trial that the oncologist was aware of and we got in. I'd obviously heard of clinical trials but that was my introduction to the machinery by which they operate.
This may be a philosophical point of view, but I do not see much personal value in clinical trials. You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.
Most studies that which reach stage 3 will not be approved, and that's because they're found to to be unhelpful or even harmful. So the most likely scenario is you do nothing or even hurt yourself by seeking out clinical studies, all of which will be optimistically framed as promising and potentially revolutionary. This can be particularly dangerous if you're opting into a trial in lieu of the standard treatment, as opposed to in addition to such.
> You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.
The probability that I think you're talking about here is not actually relevant, given that the trial is already underway. Basically, the "potential advance" event has already happened. (Similarly, the probability of getting shot by an arrow is not relevant once the arrow's already poking out of your body.)
Given the trial is already underway, the probability that matters is the fraction of treatment candidates at the phase you are considering that make it all the way through; for phase 3 trials, this is 58-65% [0], which is actually pretty good. Of course, rates for earlier phases are much worse because there's attrition at each phase.
0: https://patentpc.com/blog/clinical-trial-success-rates-how-m...
1 reply →
That’s definitely one way to look at it.
I would just say that ‘dangerous’ is relative and when the standard of care leaves effectively no hope, your tolerance for risk can change. Yes this does increase that chance of shortsighted decisions or manipulation. That just comes with the territory, I’m still very appreciative that we have the option to elect to participate in the peocess.
5 replies →
I lost somone to a rare cancer with almost zero chance of survival. A treatment with 65% success was available 30 days after they died. Ill always wonder if things could have been different. Maybe if we looked harder for trials but like you we thought it a hopeless waste of the limited time left.
4 replies →
I think because trials take so long, the probability might be higher than you say.
All ground-breaking treatments/therapies were initially only available as a clinical trial.
> I would simply lie about whether or not a treatment plan was put into place.
Prompt engineering!
Sadly, you learn that honesty is not the best choice always. And an honest answer is best given without too many priors.
(I treat patients at a cancer center, but opinions are my own and not those of my employer.)
I fully encourage any patient who wants another opinion to get one. Definitely really good advice to seek one out before you start on your treatment plan, if it can be done without undue delay. I think of planning cancer treatment like lining up to take off for a flight: some plans even if imperfect are more dangerous to alter than continue if they've already been put in motion. There are--rarely, thankfully--times where we don't end up concurring at all in the diagnosis or treatment, and this is all best sorted out before the first treatment.
But a second opinion isn't a waste just because it agrees with the initial plan. In my experience, that's actually the most common outcome, and I think it's a really good thing if a second opinion can give deserved reassurance that your original team is doing everything by the book. For many common cancers, there's consensus as to the most appropriate first-line treatment because there's peer-reviewed evidence and agreement on how to apply that evidence. When all of it points towards an effective treatment, down to a standardized dose and schedule, and it's a really good thing!
There's some subtlety that arises when there isn't a clear consensus as to which of (say) two reasonable approaches used by different comprehensive cancer centers is best. If you look at guidelines, both of those approaches would be listed as appropriate, but patients might be recommended one plan at center A and a different one at center B.
What it can come down to is that center A delivering treatment A demonstrates comparable results to center B delivering treatment B. In that scenario, if a patient lives down the street from center A and travels hundreds of miles to see me for a second opinion at center B, I would almost always agree with getting treatment A at center A. Not because I'm trying to manage what center A would think of me, but because I'd truly believe it's in that specific patient's best interest. First, all else being equal, I'd have no grounds to think that traveling hundreds of miles to get treatment B at center B would be better than staying local. Second, in general, I'd strongly doubt that getting treatment B at center A (which wouldn't be the plan they'd have the most experience with) would be superior to getting treatment A at center A.
And, yes, I absolutely have recommended when appropriate for patients to transfer care to our center, and I have also recommended when appropriate for patients to leave our center to go elsewhere (for example, for a particularly promising clinical trial option). I've seen every one of my colleagues do the same without hesitation.
This is all just from one person's perspective, of course. I know patients and families can come from different and totally valid vantage points. But to sum it up, please don't worry about managing your doctors' emotions about getting a second opinion, and find a place where you can be confident that the folks giving you their second opinion likewise aren't thinking about managing your doctors' emotions. Hopefully, they'll earn your trust that a concurring opinion means they really do think your original team has laid out the plan that's best for you.
I’m curious: why isn’t a “second opinion” included in the standard medical protocol?
As an engineer, embedding such a check step (basically a PR review for your body!) in the standard workflow feels very natural. But in the medical context, getting a second opinion usually needs extra effort by the patient and often involves awkwardness.
It feels involving too much friction given the high stakes. What is your opinion on this?
3 replies →
Thanks for writing this. It's really thoughtful. My Dad is being treated for Stage 3 at the moment, and after months of delay was told that he wasn't on "real" chemo, just some sort of palliative treatment. No one can get a clear read on what the doctors told him, and he's fairly confused himself... it's basically a nightmare game of telephone.
When it comes to what the OP was talking about... those of us who are conflict-averse and can't get ourselves to make dozens of unanswered phone calls, are we just shit out of luck if we get into that situation? As much as I hate it now if it involves disputing a mistaken Amazon purchase, I imagine I would just give up if I were already suffering. Is handling bureaucratic gatekeeping the only way to get care, outside a top tier cancer center, in your opinion? My dad's got some money, he's got private insurance. I want to say that if I were him I would have hired an advocate of some sort, to process all of this. I don't even know if a thing like that exists.
3 replies →
That last point is probably the hardest one to actually follow. When someone you love is sick, I imagine it's easy to turn every waking hour into researching treatments, chasing appointments and etc. It probably feels like doing anything less means giving up
Wouldn't you be able to just not tell that you already have a treatment plan?
Just because the second opinions did not disagree with the first, it does not necessarily follow that they were a waste of time.
I relate it wasn’t clear in my note. There were no second opinions provided. They basically refused to engage because treatment was already underway.
[dead]
I thought a second opinion for big life affecting things is just standard practice.
A friend of mine was diagnosed with leukaemia, and the doctor literally told her - get your affairs in order, you got 6months to live, tops.
She spend a day in a daze not knowing what to do, and her parents were like - get a second opinion.
That one turned out negative. The original doctor was like - ah sorry, my bad.
Had a doctor take a biopsy, said we need to wait for the test results, but should already start planning for cancer treatment.
Results come back: Just some blood under the skin.
Yep.
I've had a lisfranc injury, which while not life threatening is very serious and the quicker the surgery is done, the better outcomes.
My podiatrist did X-Rays incorrectly, I told her I'm seeking 2nd opinion just to confirm her findings. I've found a guy that specializes in lisfranc at Rush. He performed correct weight bearing x-rays. It was a bad sprain and not a torn ligament. It took 12 months to completely heal but I was walking mostly normally after 4 months.
Always SEEK 2nd and 3rd opinion if it is something serious. You can also "find" algorithms use for diagnosing and treating suspected condition to make sure your physician is up to speed.
Not all physicians are equal. They also deal with burn out, and have better and worse days.
Yeah absolutely on the 2nd opinion, my dad went into his GP and said “I think I have lung cancer”, after a period of difficulty breathing and low energy. The GP diagnosed him with low iron and gave him some iron supplements, didn’t even get a scan. A few months later he had to have a couple of litres of fluid drained from his lungs while on holiday, turned out to be mesothelioma. Obviously we’d prefer it to be low iron, but better to know what is going on and be able to respond to it.
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.
(fuck cancer)
I think it's pretty easy to understand why. When somebody is very ill, they think their illness is the most important thing in the world, and it certainly is to them. But to a doctor, they're just one of the thousands of patients, all of whom think the same thing, that they've seen that year.
And everybody thinks that with perfect medical treatment, they'd be healed, when in reality that isn't the case. Some conditions are simply terminal and the best treatment in the world isn't going to change that. And you even have the equal but opposite happen on occasion. For instance cancer sometimes spontaneously goes into remission even without any treatment, which is going to lead to a rather great outcome regardless of how inappropriate (or nonexistent) the care may have been. Had this happened to Steve Jobs, we could've seen a catastrophic social cascade begin.
Doctors are going to see those odds and outcomes play out, day in, day out.
Re: bedside manner
I found surgeons to be like SWEs personality wise, so there's that.
1 reply →
I know HOUSE is a fictional character but I use the character as a example of a doctor I would prefer. Someone who cuts through BS, tells me straight without any bedside manor.
And as a patient, if I'm doing something stupid, say I'm an idiot. But just diagnose and treat my illness quickly and efficiently no matter how common or rare.
tldr: I like 'House' type doctors over the opposite.
> if you were deploying code to the mars rover, and your colleague asked to do a code review before you pushed go, would you be offended?
Having done so, from both the asking and being asked, yes I was offended. And glad I was asked after actually doing it. And learned to be insistent in asking. We all have hesitation but we should realize that “expertise” is a relative illusion and peer review is the only standard of progress we have ever demonstrated to be (eventually) fool proof. There are no people I trust in any field to be right for the sake of their name or accomplishments. Society needs that feeling to be stymied and eventually eliminated.
Maybe things have changed, but in my day when deploying code to an interplanetary spacecraft, code reviews (emphatically plural) were not optional, and being offended by them would have been a career-ending move.
It definitely feels less personal when you ask AI to find weaknesses in your code. I do it all the time, but I am also sure that I am bothering nobody.
> A lot of us are preconditioned from birth to trust our clinicians.
As a Asian, this is really fascinating to me. We, in general, are conditioned exactly the opposite. We don't trust our doctors, govt or anyone other than our immediate family. Taking a second opinion is just normal. As someone who now lives in the "west", and is now taking a second opinion for a condition, my doctor here was almost offended when I asked for a copy of my results in order to take a second opinion.
That's really cool and surprising to me. I always expect Asians to be very "lawful" and rule following and trust authority. Glad I was wrong on this one.
High trust society vs low / zero trust society.
Sadly, most Western countries are hellbent on degenerating to low trust societies.
Seems like an odd place to put this comment when second opinions are essentially low trust behavior which is seen as a good.
1 reply →
"The west" is an equally useless and vague term as "Asian"
> if you are within a 2-3 hour drive of a major cancer center, go there instead of your local community hospital
This is possibly bigger than second opinions if it's an option for you. Part of it is just volume, the big national cancer hospitals see so many cases that they have super specialized departments & doctors to deal with much more niche areas of expertise.
Your local hospital might have "the skin cancer doctor" but MSK has ~20 sub categories of skin cancer with different doctors specializing in each. And so on for each area/type.
A relative of mine had a rare form of (very treatable) childhood cancer in the NYC metro area. It was diagnosed eventually by the local oncologist in the local hospital. His parents were ready to use the local hospital/doctors until the conversation turned to "and how many of these have you treated before and how did it go?". Sheepishly the doctor said "once and uhmmm, well.. it went ok".
So they sent the files (back in the physical paper files via mail era) to MSK and saw a super specialized treatment team that dealt with this regularly, successfully.
I'll second this and share my father's experience. He spent most of his adult life in PA, but he and my mom moved to SC partially for finical reasons when COPD forced him into early retirement--his brother and business partner was also moving too.
Anyhow, a few years back he found out while being evaluated for a lung transplant at Duke he had stage 2 lung cancer (I don't recall the type). They had actually missed it six months prior on an earlier scan. Thereby dashing his hopes for a transplant. Long story short my brother convinced him to head to UPENN for a second opinon. Where they were at the time, one of a handfull of places in the country that did proton radiation. His SC team convinced him to do one round of chemo as he couldn't get into PENN for another 5 months. He has been cancer free for a few years now. And they credit the Proton radiation.
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.
3 replies →
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.
Think of it as a second set of eyes.
Do you get a 3rd opinion and go with the consensus? Genuinely curious what people think.
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 don’t regret it.
1 reply →
I broke my leg at the edge of the Fibula bone. 4 Orthopedic specialists gave me 3.5 different opinions with different and conflicting recommendations for treatment.
So, unless the first two opinions are completely identical - yeah, definitely get the third. Better to go for people with slightly different specializations if relevant.
I've had a couple of second opinions for far less serious stuff in recent years. In both cases the original doctors suggested major surgery pre-emptively, even though they were very different types of thing.
In the first case, I decided to talk to an expert in the particular area who then ordered different tests. These indicated the issue had actually gone away completely, and I avoided surgery as a result of those.
In the other, a grade 2 ACL tear, it was less clear-cut, but I felt like the explanations given by the second doctor as to why he'd recommend against surgery were clearer and made more sense to me.
I'm glad I got both second opinions and the first case in particular, made me much more likely to get second opinions in future as well as more confident about doing so.
Yes you get a 3rd, 4th, 5th opinion! Until you understand what the consensus seems to be. This is serious stuff.
I understand that insurance is not your friend and you must advocate for yourself in the modern healthcare landscape, but if appointments take months to get to because everyone is overbooking limited oncology specialists to get their second and third opinions, at what point is this counterproductive for wider healthcare outcomes?
Particularly with cancer, when earlier treatment is better.
From the perspective of both individual patients and the system as a whole, the best long term potential lies in more accurate and widespread cancer screening. If it can be detected earlier then treatment becomes much easier and cheaper. The liquid biopsy assays available today still aren't accurate enough to recommend for everyone but they should improve. In a few decades I expect adults to be getting them every few years.
After reading this thread it seems to me that differences in doctors are so vast that multiple opinions are necessary to ensure good care.
If doctors improve (maybe by using better analysis tools), hopefully it will no longer be necessary.
"Never go to sea with two chronometers; take one or three."
If think for a moment I'm sure you can come up with a solution.
My mom removed her breast cancer in 2006. It never came back, no metastasis. She did however get a new separate grade 4 glial cancer this year and died within a month of the operation due to undiagnosed sepsis. She was immunocompromised and the medication she was on was hiding the signs of pneumonia. After they completely removed the brain tumor, she looked strong with only minor motor impairment, but she probably picked up the bacteria in hospital.
The lesson I took from my brother's Hodgkin Lymphoma treatment was that the quality of your local A&E/Emergency Room matters a lot. It's easy to get focused on the cancer treatment (and that is of course extremely important). But in the UK, at least, if you become seriously ill at home during your treatment you will end up in the Accident and Emergency department, not the cancer ward.
Treatment for cancers such as lymphoma unavoidably result in the immune system being basically destroyed... so patients are, at times, unbelievably vulnerable. My brother ended up in A&E several times. Sometimes it was a false alarm - just nasty but normal side-effects from the treatment. But, several times, he had caught an infection that required IV antibiotics to resolve. He ended up on PipTaz several times and Vancomycin at least once.
You would think an immunocompromised cancer patient would go to the front of the line. But this was absolutely not his experience. Even though his wife repeatedly told anybody who would listen about his situation, he was nevertheless subject to huge delays in diagnosis on multiple occasions.
And - this is the point of my post - delay in treatment for an infection on one occasion resulted in sepsis that was only diagnosed when his wife eventually persuaded a doctor from the cancer ward to come down and look at him herself.
Absent his wife's borderline aggressive/hysterical advocacy for him he would be dead.
My takeaway was that the 'best' situation, therefore, is one where your cancer hospital is a genuine specialist centre AND your local emergency department is highly rated and sees a lot of cancer patients and so knows what to look for. If the latter is not the case, you will need an extremely effective and tenacious advocate to fight on your behalf.
We were blindsided, her cancer was completely removed, but even though they suspected a metastatic cancer, histopathology determined grade 4 glial tumor, idh-1 negative, p16, GFAP positive, Ki-67 20-30%. She then developed oral thrush and had a cough, she was also feeling tired and sleepy, and had swollen ankles. Looking back, these were fairly obvious signs. But the surgeons never warned us about any of it, we attributed the swelling to dexametasone, coughing to her smoking habits, her frequent allergies and sinus problems. She was waiting for the molecular analysis of her tumor before starting treatment. Her state would at times improve completely, and her primary care physician dismissed her after seeing her throat, and the blood work was only done a few days later. By then her CRP was already through the roof. Only then was she admitted to the pulmonology department, and she never recovered, went into septic shock and died a week later. I would say that the first symptoms started maybe a few days before going to the doctor, and I suspect had we gone to the main ER in the next biggest city (where she did the operation), she would've gotten a throat swab and blood drawn at least. It's so sad, because it took only a week or two from diagnosis to her tumor being removed completely by skilled surgeons and she never got a chance to fight it. Croatian healthcare is also such that it's better to drive to the big city emergency hospital directly than to rely on your doctor or small local emergency, usually they are understaffed and just plain uninterested.
2 replies →
The only people who trust clinicians are people who haven't been through the healthcare system. There's the before time and after time. It changes you. Every field has good people, bad people and mediocre people. Doctors are no different.
Anyway, I would say I actually had relatively positive experience with Thyroid cancer. I had been seeing my Endo for 10 years at that point since I had hypothyroidism. His nurse was on top of everything. Very calm and reassuring during the whole process.
But all my experiences with the healthcare system outside of that were just disappointing. I had RCVS 2 years ago and I was in the ER and the radiologist summarized the report wrong even though he has read it correctly. They were starting me on stroke protocol and giving me these drugs but I had ChatGPT read it and it was like this is wrong. It's supposed to say no significant stenosis in the neck. It actually said significant stenosis in the neck. The dr reported it immediately and the radiologist corrected it. What a shit show. No one could even give me a straight answer on if I could go back to exercising or when I can get off a medication. Every doctor I saw was completely different. Have a few other stories like that pre LLM's. But you have to advocate for yourself. And always double check the doctors with LLM's now a days.
I was with you right up until your last sentence. Absolutely get a second opinion for any diagnosis that you deem warranted, but putting your healthcare decisions in the hands of an LLM is not the route I'd be suggesting to anyone.
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.
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.
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.
It's so disheartening. I experienced a lot of friction and frowning from medical professionals when doing so. It even spills on family members because they're afraid of upsetting their current doctors will cause lower standard of care, and iirc their doctors did complain about me asking for data to get a 2nd opinion.
Doctors just have absolutely massive egos, because they suffered though a lot of staying up through the night during residency and difficult exams and whatnot and they also are king of their fiefdom now, and how dare you question their authority over life and death. Not all are like this, but many many.
My recent encounters agree with that. In most cases I wouldn't mind (sometimes it's even funny), but in case of terminal disease I would expect a tiny bit of restraint.
> Asking for a second opinion sucks. A lot of us are preconditioned from birth to trust our clinicians.
I wonder if it's a cultural thing. I live in Poland, here we ask for second, third and sometimes more opinions in cases far more trivial then cancer. We do this before any kind of surgical procedure, painful treatment, anything that could be even unpleasant. I saved myself from a couple of root canal treatments just by consulting different dentists. We don't trust doctors at all.
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.
And she's wealthy.
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.
Is it ok/recommended to tell the doctor that you're getting 2nd opinion from that you're coming to them for a 2nd opinion?
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.
Default to telling everything to your physicians. A good physician will have zero qualms with you getting a second opinion.
I've heard it put this way: Never lie to you doctor, your lawyer, or your accountant.
If the opinion is basically objective (of course can't be fully) your doctor shouldn't have any issue with getting a 2nd opinion, if it's from a real doctor. Would see it as a red flag if they really object.
Yes because everyone will want to share records / data. The specialized clinics / centers are used to this role! Especially if you are going from a more-generic to a more-specialized center, but even if you're walking down the street.
This is literally life-and-death. My recommendation is for full transparency, it was crucial for us.
> Yes because everyone will want to share records / data.
You should really try to have a copy of your own records. Different sorts of clinics may sometimes make it difficult to get a copy of studies, reports, etc. but it's something you should really insist in, to the point of avoiding places that don't give them to you. It lets you have greater selectivity of your healthcare providers by not depending on a provider for access to your own medical data. Resist the lock-in.
Also, providers may not archive your data forever. I've had one that realized my records from a visit some years earlier had been discarded/lost. They would have been really useful to make a comparison.
Having your records yourself, you won't have the need to tell them so they can ask for your records to the other provider on your behalf.
It's a good idea to tell them you came to them for a second opinion after they've already given it, so they can also give their opinion on the first opinion. However, that's different from telling them so they can get your records when you should already have them yourself.
Something that I learned when my father was diagnosed with cancer, you can "shop" for a treatment plan. He visited various hospitals and met with doctors to hear their plan. He picked one and then used a local hospital to implement it.
"Your doctor will NOT be offended"
Sadly some will be. But they are to be avoided anyway.
Yep, a family member asked for a second opinion after being recommended post-treatment medication, and her doctor dropped her.
Close family member of mine was wrongly diagnosed(not cancer), did not listen to the hint we had, prescribed the wrong medicament. She was in bad condition. Went to another doctor (while the first one was on vacation) - got the right test, the right medicament and recovered quickly. Her actual doctor after learning this did not apologize, but threw a tantrum and also dropped her. Probably enough legal grounds to sue, but who has time for that.
[flagged]
[flagged]