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.
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.
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.
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. Ultimately 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.
> 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".
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.
Honestly it's horrifying how many people are happy to chat away with a bot about every medical condition they have. AI isn't your doctor and isn't bound by HIPAA. It's not a great idea to hand out such extremely sensitive information that can be sold to anyone willing to pay for it, or end up leaked, or stolen. I mean, depending on the diagnosis, they might not be around long enough to suffer the consequences, but people who plan on living for a while should give more thought about the impacts that could have on the rest of their life.
> 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.
Yep! It’s pretty simple. Just dates, events, records with some loose links between them. Charting for the kids’ growth, and our blood test results and prescriptions, vaccines, and so on. It’s primarily hooked up to our personal agent over LAN so we just say X and Y happened.
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.
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.
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 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 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.
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
Been gone through something similar. It's important to be persistent.
My PET-CT was originally scheduled for 6 weeks, and they couldn't get it sooner. I had to call every imaging labs within 50-100 miles radius, eventually got one within the next couple of days.
The next important one is to find the best doctor you could afford. I didn't have a lot of faith on my local oncologist, especially when he said that my cancer (nasopharyngeal carcinoma) is rare and had not much experience with it.
I was able to get ahold of the chief surgeon at UCSF, purely by luck. Felt a lot better when he said that this type of cancer is pretty common for south-asian descent. He has dealt with it quite often due to a large concentration of asian in the bay area.
The treatment sucks, but small price to pay considering I can spend more time with my family.
NPC is not rare even among not Asian-descent people, it’s just poorly documented; I lost my brother to it in July and we don’t have anybody coming from Asia our ancestry, that we know of. The doctor did said “there are only 20 cases of this in the world” after citing a paper where the sample size was 20. He did not order genetical tests nor tests for biomarkers for modern drugs. “Standard of care” my brother got in the US is from the 80s and it was unconnected to the molecular biology of his cancer (there has been a lot of relevant research in the last 20 years), but the doctors will subject you to it before even allowing you to access the better, most modern options. In my brother’s case, the standard of care treatment put fuel into his process instead of slowing it down, and by the time immunotherapies and other options were considered, it was already too late.
One thing I noticed is that the oncologists managed my brother far more than they actually worked on his case; oncologists are often overworked and, by necessity, desensitized. They are aware of new treatments because the pharma industry takes good care of that, but they are way less willing to read scientific literature relevant to a specific type of “rare cancer” present in a “single patient”, and they actually need the two things to be effective.
I feel for you and for your family; may the stars align for you and you get to be out of your crucible with the least amount of suffering.
Thank you. So sorry to what happened with your brother.
I agree with you, NPC is not rare. I know at least 3 people on my network that have them.
I'm lucky, in a way that the stage was low (stage 2, T1N1, low-risk/low-EBV).
My entire treatment (chemo-radiation) was done in ~3 months, and my team of doctor knew well what they were doing. The side-effects of the treatment last for years unfortunately, something I have to deal with.
It's been 3 years on remission, no sign of cancer/marker anywhere. I'm grateful.
I have a similar but more benign story, and cannot emphasize enough how correct this comment is. I had severe abdominal pain and vomiting. My PCP told me it was GERD and I should lose weight. Two days later I was getting an emergency cholecystectomy because my gall bladder had necrotized.
A good shorthand is that unless a doctor has positively identified something through imaging or biopsy do not trust them when they tell you what something is or what to do about it.
If you aren't sure how best to advocate for yourself, use AI to help figure out what tests and referrals to ask for. You might feel like a jerk, but don't expect anyone to care about you more than you do.
I 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'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.
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.
It also helps that your history with the doctor will help you build trust. If you have the same doctor for years and you only went twice for symptoms (that was treated by specialists), then your doctor might redirect you to a specialist in no time as soon as you have any new symptoms.
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.
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.
One of them listed in my state is at Cold Spring Harbor Laboratory, they do research on Cancer and aren't a medical facility so I don't know if all of those centers act as places people should go.
I no longer go to my local community hospital for any purpose. It’s either an inconsequential thing that my primary care doctor can deal with, or go to a large reputable hospital even if it’s a one-hour drive away.
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.
But you experience is not "Things to know when you get cancer"
I agree with you in spirit but once you know you diagnosis most cancer treatment isnt actually that complicated because we dont actually know how to treat cancer.
The problem with that is wait time. Sure if you can get into Penn, or a similarly extremely well known place, they are generally great, but can you get seen in time? They are _extremely_ backlogged for "normal" people. If you know someone or are a VIP, you can perhaps jump the line.
Had to make this calculus myself - was diagnosed with stage 0 melanoma, penn never returned my (multiple) phone calls. So I went with the local Moh's surgeon who removed it 3 weeks after diagnosis. Did I make the right call? I guess I'll find out in a few years
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.
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.
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.
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 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 experienced such a stupid diagnosis from a doctor in the past, I don't automatically give them the benefit of the doubt.
No one advocated "putting your healthcare decision in the hands of an LLM." Answer the post that was written, not the one you rewrote in your head to conform to your biases.
Current frontier LLMs are incredibly powerful diagnosticians. They will generally give you the best assessment that can be made on the basis of the information you include in the prompt. So it's important to make sure that information is accurate, and also that it's phrased well enough to allow the model to weigh the importance of each detail.
Unsurprisingly, the same tips are important when communicating with your actual doctors.
Even the great doctors make mistakes. As a patient, you know your history front to back, but doctors can forget or miss even basic details. They tend to have little time for each patient, so I understand how it happens. You have to continually pay attention, correct people and make sure to accurately describe everything you know. Be a pain in the butt, do a ton of your own research, and ask ask ask ask ask.
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. Various 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 avoiding loss of information. Resist the lock-in.
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 have them yourself.
To the doctor you're getting the second opinion from, don't tell them the first opinion right off the bat until you've heard the second opinion. This to not put them in a position where they feel any pressure whatsoever to agree or disagree to the first. You want their own uninfluenced opinion. Afterwards, yes, you can tell them the first opinion, so they can give their separate opinion on that.
If the opinion is basically objective (of course can't be fully) your doctor shouldn't have any issue with getting a 2nd opinion, if it's from a real doctor. Would see it as a red flag if they really object.
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.
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.
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.
(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.
Thanks for writing this. It's really thoughtful. My Dad is being treated for Stage 3 at the moment, and after months of delay was told that he wasn't on "real" chemo, just some sort of palliative treatment. No one can get a clear read on what the doctors told him, and he's fairly confused himself... it's basically a nightmare game of telephone.
When it comes to what the OP was talking about... those of us who are conflict-averse and can't get ourselves to make dozens of unanswered phone calls, are we just shit out of luck if we get into that situation? As much as I hate it now if it involves disputing a mistaken Amazon purchase, I imagine I would just give up if I were already suffering. Is handling bureaucratic gatekeeping the only way to get care, outside a top tier cancer center, in your opinion? My dad's got some money, he's got private insurance. I want to say that if I were him I would have hired an advocate of some sort, to process all of this. I don't even know if a thing like that exists.
I’m so sorry you’re dealing with this. One thing I would strongly suggest is look for the patient advocacy/advocate for the organization handling your dad’s care. They helped me in one case with my wife’s care, which unfortunately was beset with incompetence and indifference from the start.
Memorial Sloan Kettering is widely considered one of the best treatment centers for gynecological cancers, and they were completely useless for us. The Dr. spent about 15 minutes talking to us and reviewing the case, gave no advice, said nothing in favor of or against the current plan and just said to reach back out after the current treatment plan played out.
This was six years ago and I still can’t think about it much without raising my blood pressure.
Anyway, patient advocate and phone calls/office visits are about the only tools you have. It can be a full time job keeping things on track.
We had something similar with my father in law who just passed from pancreatic cancer.
The doctors each saw one small part of the case, he was being passed between multiple doctors and NPs. There was no coherence. At one point he ended up on so many medications that made no sense he passed out. Only at the hospital when a doctor looked at everything together did they realize what a mess had been created and got him back on his feet.
I ended up giving all of his records to an agent and making it the coordinator. It found a bunch of problems. He was being given the wrong pain medication on the wrong schedule, the moment that was fixed he felt a lot better (unfortunately he lost so much weight on the wrong schedule it's what got him in the end). They also use voice transcription software, which led to a key error about what genetic markers he had. Fixing this changed his treatment plan!
In general, I wish we had been much more aggressive with this. Last time we had a major medical issue an NP almost killed my wife. At the time there was no AI, so we just had to recognize things were in decline and start being aggressive about getting in with the right doctors (the moment we found the right one she was diagnosed, had surgery and was cured in weeks).
He started doing better when the AI became the central coordinator and doctors/tests/etc. became their inputs. It was an excellent advocate. And while we have science backgrounds, we aren't doctors. But it could present evidence for actions in ways that the doctors appreciated (his oncologist was impressed and called the AI a member of the team).
Unfortunately his physical reserves were very drained at that point. He probably would have had another 6-12 months with his family if it wasn't for the disorganized mess of a care system that we have.
In the U.S., many hospitals have some sort of patient navigator or advocate. I’m aware of at least some insurance companies even offering such services (although I can’t speak to whether they are necessarily well aligned with patient interests). See if you can request these services.
A trusted family member is always a huge help at appointments: even if it’s infeasible to go in person, ask to listen in remotely. I’ve been in those shoes too.
Be overcommunicative, be the squeaky wheel: for our part, we know the difference between even zealous advocacy (great!) from disruptive behavior (not so great!).
Sorry, the system can suck. I promise you that every oncologist has had to make those unanswered calls too, so we do know something of this end of things. But you and your loved ones don’t deserve to suffer for it, so don’t be shy.
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 to 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?
I'm not the poster you're responding to, but I suspect (bitterly) that it's because engineers and architects are held liable if their inattentiveness to detail causes someone to die, whereas medical professionals are not unless they do something so wildly negligent that you could prove it led directly to an already sick patient's death. (And even then). In most engineering scenarios, there's a paper trail leading back to every decision, and what you're working on is a determinstic system with known inputs and expected outputs. In the medical field, it seems as if a second opinion is more akin to getting food at a restaurant and then taking it to another restaurant to ask the chef if it's too salty. The inputs are subjective, the results can't definitely be traced to them, and no one expects anyone to live through the meal anyway.
There is a standard practice at cancer centers which would be more the equivalent of PR review. Often it’s called “tumor board” but names vary (ours is called “case conference”). Depending on the institution and department, all, most (anything but the most straightforward), or some (unusual, advanced, prompted by patient discussion, etc.) cases are brought up for a consensus opinion. Like PR review, the format and formality of this process will differ institutionally, but some version of it is standard as part of the “workflow.”
If the specific department reviews all or most cases as a matter of course, it may not even be mentioned to patients (let alone requiring them to ask for it) unless the consensus opinion alters the original plan. Pathology or radiology consensus interpretations usually precede the issuance of a final report (so as to avoid giving one interpretation that’s potentially acted on but then amended) and are notated with specific verbiage.
A second opinion generally means transferring records and tissue samples outside the original institution. Think of it more like assigning the same bug report to two teams. There is a role for this, but I wouldn’t think of it as PR review.
This may be a philosophical point of view, but I do not see much personal value in clinical trials. You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.
Most studies that which reach stage 3 will not be approved, and that's because they're found to to be unhelpful or even harmful. So the most likely scenario is you do nothing or even hurt yourself by seeking out clinical studies, all of which will be optimistically framed as promising and potentially revolutionary. This can be particularly dangerous if you're opting into a trial in lieu of the standard treatment, as opposed to in addition to such.
I would just say that ‘dangerous’ is relative and when the standard of care leaves effectively no hope, your tolerance for risk can change. Yes this does increase that chance of shortsighted decisions or manipulation. That just comes with the territory, I’m still very appreciative that we have the option to elect to participate in the peocess.
>The bigger problem with trials is not the danger, so much as the fact that they're unlikely to do anything.
And? What is the point of this observation? Of course they are unlikely to do anything. Your other option is to do nothing and die. Nothing wrong with that if that's what people choose to do...'accept their fate' and all that. I'm not opposed to it at all, there's a certain appeal to it.
But when your wife and the mother of your two beautiful daughters is laying helpless on nature's altar you fucking move dude. You don't do nothing.
The point is exactly what I said: “doing something”, in this case, is not the same thing as “saving your loved one’s life.”
And there’s also a cost. There’s always a cost. I’ve lost friends and family to cancer too, and watching people you love torture themselves with ineffective treatments is agonizing.
When it comes to clinical trials, you need to start with the cold, hard reality that you’re doing an altruistic experiment with the remaining portion of your life.
Not that long ago I went to see an acquaintance during his last time on this Earth - bladder cancer. His final time would come the next afternoon, so he was already well into the 'he can hear you but can't speak' phase. At first I felt absolutely awful for him and in general. But then thinking about it more I realized that there's nothing to really feel particularly bad about.
In not that long I'll be the one laying there in that bed, and so will everybody else that was in that room, and even on this Earth. It's just a natural part of life. He, at least, had the privilege of being able to prepare for his final moments, and getting to spend it surrounded by friends and loved ones. It's the final scene that we all will go through, one way or the other. And you know, that's about as ideal a closing act as one could hope for.
I agree. And people who have been through it frequently (e.g. doctors) have a completely different reaction to those who are going through it for the first time. But still, it's understandably a sensitive subject, and even the person most inured to death reacts differently when it's their own family (or themselves) who is dealing with it.
That said, the folks who are recruiting for clinical trials are often playing on this emotional reaction, and over-promising what can be accomplished, or simply not correcting the misperceptions of the people they are recruiting.
It's hard to recruit people into trials when you tell them with absolute clarity that there's very little chance it will benefit them personally.
I lost somone to a rare cancer with almost zero chance of survival. A treatment with 65% success was available 30 days after they died. Ill always wonder if things could have been different. Maybe if we looked harder for trials but like you we thought it a hopeless waste of the limited time left.
I’m sorry for your loss. Words from an internet rando don’t mean much, but you did the best that you could so don’t worry about what ifs. Do your best right now.
> You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.
The probability that I think you're talking about here is not actually relevant, given that the trial is already underway. Basically, the "potential advance" event has already happened. (Similarly, the probability of getting shot by an arrow is not relevant once the arrow's already poking out of your body.)
Given the trial is already underway, the probability that matters is the fraction of treatment candidates at the phase you are considering that make it all the way through; for phase 3 trials, this is 58-65% [0], which is actually pretty good. Of course, rates for earlier phases are much worse because there's attrition at each phase.
A treatment being approved doesn't mean it's more effective than existing treatments, only that it is effective. And even then, not always as in the case of the controversial Alzheimer's drugs. Looking up some exact numbers on this, for oncology/cancer about 35% of treatments at stage 3 trials will end up approved/produced. [1] This [2] study looked at the 632 medicines approved (in the French market) and found that 25 ended up providing a substantial clinical benefit relative to existing treatments, so a bit under 4%. Even with just those two multipliers you're looking at around a 1% chance of the outcome most people are aiming for with trials.
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
> 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.
I don't know if this is a good example: If the first opinion is right and the second opinion is wrong you could receive a treatment that you don't need and that could hurt you, so I think one need to know for sure why the first opinion is not right, that is not so easy.
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.
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.
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.
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.
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.)
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.
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 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.
> 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.
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, 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.
I'm so sorry for you and your family's loss. This sounds utterly devastating. (And apologies if my message above sounded like a criticism... that wasn't the intent at all)
I'm very critical of myself and my family, she was the head of the house so to speak, and she was the one making decisions. She didn't want to see the doctor so in those few weeks we gave in, I think she was afraid of the outcome, the prognosis wasn't good. Nothing in the slightest prepared us for this outcome, it was a total blind spot.
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.
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.
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.
> 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.
> when second opinions are essentially low trust behavior
Which confirms my point.
> which is seen as a good
It absolutely is not. As a patient, I shouldn't have to bear the mental load and financial expenses of having to get second or third opinions because apparently, doctors can't do that on their own or make sure they stay on top of academic research. And certainly not with a confirmed diagnosis of cancer.
You rightly use "the west" in inverted commas because it's a vague and useless term then all you tell me is you're "an Asian". There's 5 billion people in that category from Pakistan to Japan.
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.
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.
> 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.
> 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.
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.
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.
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.
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, while you yourself can spend days or even weeks researching you health problems and planning your healthcare.
- Research your health problems: you don't need to be an expert to read about your health problem, learn the basic anatomy involved and the high and mid-level details of the surgery or treatment. You'll have to look up a lot of terms, but it's not that bad and the articles aren't that difficult to understand at a high-level.
- You are also the manager of your healthcare: Planning and seeing the big picture is critical. You can optimize a lot of the planning of appointments, exams and surgeries buy thoughtful planning. And, you can definitely catch a lot of opportunties and mistakes in decisions that are made. Just like in a tech project, a couple of good random ideas can lead you to some fantastic outcomes.
There are many more, but yeah, working with the healthcare system is an skill that can be studied and learned. Really useful.
1) Very old injuries, almost all when I was a child or teen playing sports or doing reckless things, which caused neuralgia (nerve pain). Two were on the head (one from skiing, one from playing baseball and getting hit with a bat on the head by accident). Another on the tailbone that am focusing on now
2) Very bad posture related to these injuries - had horrible posture as a teen, and thinking back, this is very probably due to my tailbone pain. It caused a ton of pain when sitting and also caused me to twist up my pelvis and hips to avoid it. This terrible twisting on top of the other pain destroyed my posture and clenched up my neck, and for the past 30 years, have been trying to undo those postural problems and muscle clenching. Have done a lot of physical therapy and exercises, but it's much better now (although, it's still a work in progress and will probably never be finished).
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.
347 comments
[ 0.21 ms ] story [ 48.4 ms ] threadNote 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.
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?
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.
jakeseliger.com
bessstillman.substack.com
The first cancer-related post - https://jakeseliger.com/2024/05/25/the-one-year-anniversary-...
Bess is an ER doctor, but even with all that medical knowledge, navigating cancer care seemed difficult.
So those with no medical knowledge from themselves or family or friends may have a much more difficult time.
If I ever get such a disease, I have it in writing with my family that I will not seek any treatment after the first recommendation, I will not do experimental treatments and I will not prolong a life of suffering. Rather go out under my own terms.
I'm forever grateful to Jake for writing his experiences in such detail and candidness.
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. Ultimately I came out of it fine, but I probably would have gotten a better result with someone advocating for me.
Please go and be a nuisance. As someone with a clear head you will likely be able to understand the topic better, from a more neutral standpoint, and potentially push for the best possible treatment.
This is certainly another data point for "never trust AI chatbots".
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.
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.
They also do that if you show them pictures of your poop when you have a bowel thing going on.
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.
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 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.
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.
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.
Don’t forget, Doctors are just well read mechanics
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.
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.
One thing I noticed is that the oncologists managed my brother far more than they actually worked on his case; oncologists are often overworked and, by necessity, desensitized. They are aware of new treatments because the pharma industry takes good care of that, but they are way less willing to read scientific literature relevant to a specific type of “rare cancer” present in a “single patient”, and they actually need the two things to be effective.
I feel for you and for your family; may the stars align for you and you get to be out of your crucible with the least amount of suffering.
I'm lucky, in a way that the stage was low (stage 2, T1N1, low-risk/low-EBV). My entire treatment (chemo-radiation) was done in ~3 months, and my team of doctor knew well what they were doing. The side-effects of the treatment last for years unfortunately, something I have to deal with.
It's been 3 years on remission, no sign of cancer/marker anywhere. I'm grateful.
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.
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.
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.
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.
My experience: I was horribly sick for 10 months, none of my local doctors could figure it out, then I drove to Penn Medicine in Philadelphia and they did the right labwork in the first visit. These top centers just have different mindset than your community hospitals.
The specific term is called "NCI Designated Cancer Center". If you can go there, do it.
Just take the mindset of - if this gets screwed up, where do i get sent to deal with the screw up, and just go there first.
the crazy thing is, as mentioned above, they probably take your insurance and your not going to end up paying more to be at a top notch facility.
Once you're at that point, just go to the top of the list for whatever specialty and fly out of state, or even to a different country. US healthcare is so absurdly expensive that flights and hotels kinda have to be cheaper than the care no matter how crazy you go.
I agree with you in spirit but once you know you diagnosis most cancer treatment isnt actually that complicated because we dont actually know how to treat cancer.
Had to make this calculus myself - was diagnosed with stage 0 melanoma, penn never returned my (multiple) phone calls. So I went with the local Moh's surgeon who removed it 3 weeks after diagnosis. Did I make the right call? I guess I'll find out in a few years
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.
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 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 experienced such a stupid diagnosis from a doctor in the past, I don't automatically give them the 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. Various 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 avoiding loss of information. Resist the lock-in.
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 have them yourself.
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.
And as a patient, if I'm doing something stupid, say I'm an idiot. But just diagnose and treat my illness quickly and efficiently no matter how common or rare.
tldr: I like 'House' type doctors over the opposite.
I found surgeons to be like SWEs personality wise, so there's 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.
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.
When it comes to what the OP was talking about... those of us who are conflict-averse and can't get ourselves to make dozens of unanswered phone calls, are we just shit out of luck if we get into that situation? As much as I hate it now if it involves disputing a mistaken Amazon purchase, I imagine I would just give up if I were already suffering. Is handling bureaucratic gatekeeping the only way to get care, outside a top tier cancer center, in your opinion? My dad's got some money, he's got private insurance. I want to say that if I were him I would have hired an advocate of some sort, to process all of this. I don't even know if a thing like that exists.
Memorial Sloan Kettering is widely considered one of the best treatment centers for gynecological cancers, and they were completely useless for us. The Dr. spent about 15 minutes talking to us and reviewing the case, gave no advice, said nothing in favor of or against the current plan and just said to reach back out after the current treatment plan played out.
This was six years ago and I still can’t think about it much without raising my blood pressure.
Anyway, patient advocate and phone calls/office visits are about the only tools you have. It can be a full time job keeping things on track.
The doctors each saw one small part of the case, he was being passed between multiple doctors and NPs. There was no coherence. At one point he ended up on so many medications that made no sense he passed out. Only at the hospital when a doctor looked at everything together did they realize what a mess had been created and got him back on his feet.
I ended up giving all of his records to an agent and making it the coordinator. It found a bunch of problems. He was being given the wrong pain medication on the wrong schedule, the moment that was fixed he felt a lot better (unfortunately he lost so much weight on the wrong schedule it's what got him in the end). They also use voice transcription software, which led to a key error about what genetic markers he had. Fixing this changed his treatment plan!
In general, I wish we had been much more aggressive with this. Last time we had a major medical issue an NP almost killed my wife. At the time there was no AI, so we just had to recognize things were in decline and start being aggressive about getting in with the right doctors (the moment we found the right one she was diagnosed, had surgery and was cured in weeks).
He started doing better when the AI became the central coordinator and doctors/tests/etc. became their inputs. It was an excellent advocate. And while we have science backgrounds, we aren't doctors. But it could present evidence for actions in ways that the doctors appreciated (his oncologist was impressed and called the AI a member of the team).
Unfortunately his physical reserves were very drained at that point. He probably would have had another 6-12 months with his family if it wasn't for the disorganized mess of a care system that we have.
A trusted family member is always a huge help at appointments: even if it’s infeasible to go in person, ask to listen in remotely. I’ve been in those shoes too.
Be overcommunicative, be the squeaky wheel: for our part, we know the difference between even zealous advocacy (great!) from disruptive behavior (not so great!).
Sorry, the system can suck. I promise you that every oncologist has had to make those unanswered calls too, so we do know something of this end of things. But you and your loved ones don’t deserve to suffer for it, so don’t be shy.
As an engineer, embedding such a check step (basically a PR review to 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?
Medical oncology is not an attractive specialty. High stress, poor pay, fraught conversations with often aggressive family members.
There is a standard practice at cancer centers which would be more the equivalent of PR review. Often it’s called “tumor board” but names vary (ours is called “case conference”). Depending on the institution and department, all, most (anything but the most straightforward), or some (unusual, advanced, prompted by patient discussion, etc.) cases are brought up for a consensus opinion. Like PR review, the format and formality of this process will differ institutionally, but some version of it is standard as part of the “workflow.”
If the specific department reviews all or most cases as a matter of course, it may not even be mentioned to patients (let alone requiring them to ask for it) unless the consensus opinion alters the original plan. Pathology or radiology consensus interpretations usually precede the issuance of a final report (so as to avoid giving one interpretation that’s potentially acted on but then amended) and are notated with specific verbiage.
A second opinion generally means transferring records and tissue samples outside the original institution. Think of it more like assigning the same bug report to two teams. There is a role for this, but I wouldn’t think of it as PR review.
Most studies that which reach stage 3 will not be approved, and that's because they're found to to be unhelpful or even harmful. So the most likely scenario is you do nothing or even hurt yourself by seeking out clinical studies, all of which will be optimistically framed as promising and potentially revolutionary. This can be particularly dangerous if you're opting into a trial in lieu of the standard treatment, as opposed to in addition to such.
I would just say that ‘dangerous’ is relative and when the standard of care leaves effectively no hope, your tolerance for risk can change. Yes this does increase that chance of shortsighted decisions or manipulation. That just comes with the territory, I’m still very appreciative that we have the option to elect to participate in the peocess.
Most drugs don't work. Even in phase 3, the failure rate for cancer drugs is something like 50%. And that's usually for some non-survival endpoint.
Clinical trials are noble, admirable things to do, but too many people think of them as treatments, when they really are not. They're an experiment.
And? What is the point of this observation? Of course they are unlikely to do anything. Your other option is to do nothing and die. Nothing wrong with that if that's what people choose to do...'accept their fate' and all that. I'm not opposed to it at all, there's a certain appeal to it.
But when your wife and the mother of your two beautiful daughters is laying helpless on nature's altar you fucking move dude. You don't do nothing.
And there’s also a cost. There’s always a cost. I’ve lost friends and family to cancer too, and watching people you love torture themselves with ineffective treatments is agonizing.
When it comes to clinical trials, you need to start with the cold, hard reality that you’re doing an altruistic experiment with the remaining portion of your life.
In not that long I'll be the one laying there in that bed, and so will everybody else that was in that room, and even on this Earth. It's just a natural part of life. He, at least, had the privilege of being able to prepare for his final moments, and getting to spend it surrounded by friends and loved ones. It's the final scene that we all will go through, one way or the other. And you know, that's about as ideal a closing act as one could hope for.
That said, the folks who are recruiting for clinical trials are often playing on this emotional reaction, and over-promising what can be accomplished, or simply not correcting the misperceptions of the people they are recruiting.
It's hard to recruit people into trials when you tell them with absolute clarity that there's very little chance it will benefit them personally.
The probability that I think you're talking about here is not actually relevant, given that the trial is already underway. Basically, the "potential advance" event has already happened. (Similarly, the probability of getting shot by an arrow is not relevant once the arrow's already poking out of your body.)
Given the trial is already underway, the probability that matters is the fraction of treatment candidates at the phase you are considering that make it all the way through; for phase 3 trials, this is 58-65% [0], which is actually pretty good. Of course, rates for earlier phases are much worse because there's attrition at each phase.
0: https://patentpc.com/blog/clinical-trial-success-rates-how-m...
[1] - https://academic.oup.com/biostatistics/article/20/2/273/4817...
[2] - https://pmc.ncbi.nlm.nih.gov/articles/PMC10660249/
Prompt engineering!
Sadly, you learn that honesty is not the best choice always. And an honest answer is best given without too many priors.
While using this information for comparing clinical trials is fine, I want to emphasize that it would be phenomenally short-sighted to skip first-line approved immunotherapy in order to preserve the option for some random trial later on.
I'm not sure if you're actually suggesting this, but immunotherapies are some of the best cancer therapeutics that exist, so skipping approved drugs for future experiments is just a bad idea.
In our case it was a clinical trial that the oncologist was aware of and we got in. I'd obviously heard of clinical trials but that was my introduction to the machinery by which they operate.
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.
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.
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.
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.
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.)
Particularly with cancer, when earlier treatment is better.
If doctors improve (maybe by using better analysis tools), hopefully it will no longer be necessary.
And she's wealthy.
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.
Treatment for cancers such as lymphoma unavoidably result in the immune system being basically destroyed... so patients are, at times, unbelievably vulnerable. My brother ended up in A&E several times. Sometimes it was a false alarm - just nasty but normal side-effects from the treatment. But, several times, he had caught an infection that required IV antibiotics to resolve. He ended up on PipTaz several times and Vancomycin at least once.
You would think an immunocompromised cancer patient would go to the front of the line. But this was absolutely not his experience. Even though his wife repeatedly told anybody who would listen about his situation, he was nevertheless subject to huge delays in diagnosis on multiple occasions.
And - this is the point of my post - delay in treatment for an infection on one occasion resulted in sepsis that was only diagnosed when his wife eventually persuaded a doctor from the cancer ward to come down and look at him herself.
Absent his wife's borderline aggressive/hysterical advocacy for him he would be dead.
My takeaway was that the 'best' situation, therefore, is one where your cancer hospital is a genuine specialist centre AND your local emergency department is highly rated and sees a lot of cancer patients and so knows what to look for. If the latter is not the case, you will need an extremely effective and tenacious advocate to fight on your behalf.
Sadly some will be. But they are to be avoided anyway.
A friend of mine was diagnosed with leukaemia, and the doctor literally told her - get your affairs in order, you got 6months to live, tops.
She spend a day in a daze not knowing what to do, and her parents were like - get a second opinion.
That one turned out negative. The original doctor was like - ah sorry, my bad.
I've had a lisfranc injury, which while not life threatening is very serious and the quicker the surgery is done, the better outcomes.
My podiatrist did X-Rays incorrectly, I told her I'm seeking 2nd opinion just to confirm her findings. I've found a guy that specializes in lisfranc at Rush. He performed correct weight bearing x-rays. It was a bad sprain and not a torn ligament. It took 12 months to completely heal but I was walking mostly normally after 4 months.
Always SEEK 2nd and 3rd opinion if it is something serious. You can also "find" algorithms use for diagnosing and treating suspected condition to make sure your physician is up to speed.
Not all physicians are equal. They also deal with burn out, and have better and worse days.
As a Asian, this is really fascinating to me. We, in general, are conditioned exactly the opposite. We don't trust our doctors, govt or anyone other than our immediate family. Taking a second opinion is just normal. As someone who now lives in the "west", and is now taking a second opinion for a condition, my doctor here was almost offended when I asked for a copy of my results in order to take a second opinion.
Sadly, most Western countries are hellbent on degenerating to low trust societies.
Which confirms my point.
> which is seen as a good
It absolutely is not. As a patient, I shouldn't have to bear the mental load and financial expenses of having to get second or third opinions because apparently, doctors can't do that on their own or make sure they stay on top of academic research. And certainly not with a confirmed diagnosis of cancer.
This is possibly bigger than second opinions if it's an option for you. Part of it is just volume, the big national cancer hospitals see so many cases that they have super specialized departments & doctors to deal with much more niche areas of expertise.
Your local hospital might have "the skin cancer doctor" but MSK has ~20 sub categories of skin cancer with different doctors specializing in each. And so on for each area/type.
A relative of mine had a rare form of (very treatable) childhood cancer in the NYC metro area. It was diagnosed eventually by the local oncologist in the local hospital. His parents were ready to use the local hospital/doctors until the conversation turned to "and how many of these have you treated before and how did it go?". Sheepishly the doctor said "once and uhmmm, well.. it went ok".
So they sent the files (back in the physical paper files via mail era) to MSK and saw a super specialized treatment team that dealt with this regularly, successfully.
Anyhow, a few years back he found out while being evaluated for a lung transplant at Duke he had stage 2 lung cancer (I don't recall the type). They had actually missed it six months prior on an earlier scan. Thereby dashing his hopes for a transplant. Long story short my brother convinced him to head to UPENN for a second opinon. Where they were at the time, one of a handfull of places in the country that did proton radiation. His SC team convinced him to do one round of chemo as he couldn't get into PENN for another 5 months. He has been cancer free for a few years now. And they credit the Proton radiation.
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.
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.
Oh the privilege.
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.
- 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, while you yourself can spend days or even weeks researching you health problems and planning your healthcare.
- Research your health problems: you don't need to be an expert to read about your health problem, learn the basic anatomy involved and the high and mid-level details of the surgery or treatment. You'll have to look up a lot of terms, but it's not that bad and the articles aren't that difficult to understand at a high-level.
- You are also the manager of your healthcare: Planning and seeing the big picture is critical. You can optimize a lot of the planning of appointments, exams and surgeries buy thoughtful planning. And, you can definitely catch a lot of opportunties and mistakes in decisions that are made. Just like in a tech project, a couple of good random ideas can lead you to some fantastic outcomes.
There are many more, but yeah, working with the healthcare system is an skill that can be studied and learned. Really useful.
1) Very old injuries, almost all when I was a child or teen playing sports or doing reckless things, which caused neuralgia (nerve pain). Two were on the head (one from skiing, one from playing baseball and getting hit with a bat on the head by accident). Another on the tailbone that am focusing on now
2) Very bad posture related to these injuries - had horrible posture as a teen, and thinking back, this is very probably due to my tailbone pain. It caused a ton of pain when sitting and also caused me to twist up my pelvis and hips to avoid it. This terrible twisting on top of the other pain destroyed my posture and clenched up my neck, and for the past 30 years, have been trying to undo those postural problems and muscle clenching. Have done a lot of physical therapy and exercises, but it's much better now (although, it's still a work in progress and will probably never be finished).