Oncology is mostly a scam.

have you tried PNC-27 peptide? Another option is focused ultrasound (HIFU) that I would look into before going the traditional route, which might kill you quicker than the cancer itself.

> but I’d move to schedule it at a top cancer center as soon as you are relatively sure of your diagnosis

Oh the privilege.

> new folder on my Mac

In 2021/2022, I did Google Drive, so I could see it on my phone and other machines.

If this happened now (knock wood) it would be a private GH repo with every test, every image, every receipt, every appointment, every note. Then skills to ingest/OCR/normalize them all into a common format of MD. Point a Claude Code project at it, and fuzzy search it with open questions like "why did Dr. Smith say this" etc.

My father-in-law has pancreatic cancer (diagnosed in May 2026) very scary stuff. Living in Chicago-land there are plenty of cancer centers capable of helping with the situation at hand, however, even he considered MD Anderson as an option for treatment. Hope you are well and F--- cancer.

Always get a second or third opinion even if you have no doubt in your current provider.

Things that helped me the most are a camping spice shaker, a long flat hdmi cable, and a roll of painters tape.

The spice shaker had like 6 spices, and really helped the hospital food. The cable and tape helped me plug in my laptop and switch without having to get up during chemo which was kind of painful.

Tangentially related, has anyone done comprehensive labs on their own (via Function or others), or even genetic screening like Galleri, and had that prompt you to get something looked at? I've never been impressed by my annual physicals and how few biomarkers they check, but don't want to go overkill and find out I have a million things I could treat.

The second opinion advice is gold and something we should always do when the stakes are high.

Not a doctor, that said: beside the surgical operations and medicines, one thing I'd consider adding is the ketogenic diet. Research medical studies and emerging evidence, pro/cons on the internet and seriously consider switching to it.

Depending on your conditions a state of kethosis might prove demanding to your body, but even staying very near to it might probably prove useful.

Good list. Some additional thoughts:

1. Find patient organizations/support groups for your cancer. They often have excellent collections of info, from some of the sources covered in the article, and can help with finding the right doctor, or the right place to get a second opinion, or financial assistance. Some also list recruiting clinical trials.

2. Try and find local support groups. Other patients are often going to give you way better ideas and suggestions that you never thought of. It also helps enormously to have other folks going through similar journeys to talk to.

3. If you can afford it, Sloan Kettering does a remote consultation, where your primary oncologist can also be present, and they review all tests, suggest new ones, go over the treatment plan, etc. They do this in some international markets too. Pricey AF, but worth it for complex cases.

Around these parts (Long Island, New York), we have some of the best cancer treatment centers in the world.

Because we need them.

A very significant percentage of my Circle has had (or has) cancer.

We've built an app to help people with exactly this, it's called Advoca

You can plan appointment notes with trusted resources, record and summarise the appointment and follow up with any questions or research you have after. You can also journal which automatically extracts structured information on all your symptoms, side effects, medications etc.

> No one cares more about your case than you, so take control and send lots of follow-ups.

Healthcare systems everywhere are overwhelmed, and inflicting unnecessary hurdles just to get rid of/delay people, who don't 'fight for their right'. You have to put in the effort, the system will not (even if it would save money in aggregate by moving issues from expensive urgent care to cheap prevention).

The general "don't wait" line through much of this advice is recognisable as a trait I apply at work when I want to make sure things get done. "Fail fast, discover unknowns early," etc.

I can't imagine how important it is to practice this when you deal with a terminal illness that grows over time. And how easy it might be to forget this, because you're exhausted.

Based on multiple experiences in family, including my dad, I say: if treatment works, ask explicitly where your cancer type is likely to spread to, and be very mindful of changes in those areas.

If so, let the docs know what you had and that it typically spreads to the area you're now experiencing a change in, if they're not already considering it.

I find it surprising that people have to be told about getting a second opinion. In India, second, third, fourth opinions are common. I guess that is because the doctor consultations anywhere are mostly available same day if the doctor is present. Like the author says, here we absolutely have to take everything in our hands but I am really thankful for the resources shared.

There are a number of startups (and some that already got aqui-hired) working on the problem of "how do i connect with a medical provider who specializes (or at least has seen before) what i have/think i have?" what I've taken away from this is the medical industry is a lot more fragmented than engineers would prefer. It's been a while since I checked but there seem to be at least 30+ startups at least past the series A stage of "fixing" this problem.

Cancer, the third leading cause of death, is two diseases: a curable one, even with some disabilities, where everyone is happy and a deadly one, where even the doctors turn their back and care less. If you are lucky, the health care system is with you, if not you are on your own and the clock is ticking backwards. The official therapy for the second case is paliative care but it involves a wide variety of measures.

are there companies or services to help you manage all of this and advocate for you / educate you on the process? It seems like it's such a burden and there's so much conflicting information that having a guide/aid through it all would be really helpful. Especially in America where the system is very Byzantine.

One I’d add, from unfortunate experience: don’t procrastinate, even out of fear.

If you think something’s wrong, get it diagnosed asap. Everything depends on cancer type, but with some, a few months in either direction can be the difference between no chemo at all and months of chemo. Biting that bullet earlier can drastically improve what’s going to be a terrible experience.

My old man is going through the exact same thing (squamous cell carcinoma, back of the tongue), kinda weird to see this on HN of all places. He did chemorad treatment and it appeared to get it all, but then they found another localized area they want to cut out. All of this has been very invasive physically and mentally, even for finding it "early."

I suggested getting a second opinion from MD Anderson, KU, etc., on the surgery but I ultimately couldn't contend with the sense of urgency to get this thing started and rolling. It's going to be another rough year.

With absolutely zero due respect - Fuck Cancer.

I'm wishing you a swift recovery, JJ. Keep on fighting.

We just went through this with my father. He was diagnosed 8 weeks ago with stage 4 liver cancer with an unknown primary cancer. Multiple scans came back clear and couldn't find the primary, including lung and colon scans. I used Claude to collect his details and being a builder in his 60's it called out peritoneal mesothelioma which I flagged with his doctors. The biopsy came back the day after he died. Peritoneal Mesothelioma verified by three doctors, exposure to asbestos.

One of my aunt is detected for lung cancer couple of months ago. Its been hard navigating what options we have. How does this system work? Does anyone have a journey/experience with it?

It's pretty sobering that one of the most important cancer survival skills seems to be knowing how to navigate bureaucracy...

It's rather depressing how little of this advice would be helpful under the lamentable NHS in the UK.

Have had terrible pain and muscle clenching in my body since I was a teen (am 52 now) and for the past 15+ years, have been intensely working with the medical system to figure out the cause (have gotten a lot of great relief!). Agree with everything said in this blog in working with the medical system. To put my spin on it:

- You are the least-constrained team member in your healthcare: At an appointment, your doctors only get to spend ~30 min on your problem and it's unrealistic to expect them to be as deeply involved as you are on your healthcare. Yeah, you yourself can spend days or even weeks researching you health problems and planning your healthcare.

- Research your health problems: you don't need to be an expert to read about your health problem, learn the basic anatomy involved and the high and mid-level details of the surgery or treatment. You'll have to look up a lot of terms, but it's not that bad and the articles aren't that difficult to understand at a high-level.

- You are also the manager of your healthcare: Planning and seeing the big picture is critical. You can optimize a lot of the planning of appointments, exams and surgeries buy thoughtful planning. And, you can definitely catch a lot of opportunties and mistakes in decisions that are made. Just like in a tech project, a couple of good random ideas can lead you to some fantastic outcomes.

There are many more, but yeah, working with the healthcare system is an skill that can be studied and learned. Really useful.

> No one cares more about your case than you, so take control and send lots of follow-ups.

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.

Thing 425: "I should had supported Greenpeace"

People rarely feel grateful about the cancers that they never develop, because other people sweated blood and tears so they don't get cancer in the first term.

0. You gonna get fired from your job. I was fired in Atlassian.

Thank you for this. The timing could not be more perfect; my husband was just diagnosed with prostate cancer last week and we have the first meeting with his urologist in less than an hour.

Focus on the good. It's not Crohns, so unless you've been given the "you have six months" speach, your quality of life is not over, nor is your life.

Hear that. Stage3 about 6 years ago. No fun. The ugliness here is astonishing - shut up you fools.

I was diagnosed with stage 3D melanoma in May 2026 at 39.

I relate and understand this better than I wish I did. I watched my mom fight so hard, going through chemotherapy, but eventually succumbing to Ovarian cancer in 2011.

It’s a heavy burden, even as few families are unharmed by cancer.

Personally what I find burdening is the access, and cycling through immunotherapies and targeted therapies. PET/MRI screenings often. Recently had a lesion punched from my primary forearm site’s scar-bed requiring three sutures.

AIM at melanoma, an Apple Watch, Apple Health, Claude, Google Calendar, Granola, NCCN, and Outcomes4U, have been incredibly helpful.

Fuck cancer. Never stop fighting.

I have a GoFundMe, but I’m unsure if it’s permissible.

Personal family story about non-health side-effects of cancer:

40 years ago, Dad got colon cancer. He was a Jehovah Witness, they prohibit blood transfusions. He looked hard for a doctor who was willing to do surgery without blood, and found one. Surgery was successful, he was completely cured. Years later, the official medical recommendation for when to do blood transfusions dropped to use blood in less cases, which shows better outcomes. This was interpreted in his mind as "JWs saved my life, I owe my life to this cult", so he became a radical JW, which destroyed our family.

What were the signs for you to get checked out?

Thanks! I'm saving it for hopefully never. I hope your treatment is/was successful!

We've all heard someone say "if only we had caught it sooner".

The stats are pretty staggering. Cancer has a 80% survival rate IF you catch it at stage 1. By the time you get to stage 4 your odds drop to 20%. Despite everyone agreeing that early detection is the key, most doctors will discourage preventative screenings because of fear of "causing anxiety" because of the high false positive rate. You're supposed to just wait until you start pissing blood or something.

But you know what's worse than a little anxiety? Getting cancer and not finding out in time.

The best thing you can do is go sign up for a preventative screening with someone like Prenuvo or Mirovita. The price for elective MRIs has fallen drastically over the last few years. I just checked and right now can get a full body MRI with Mirovita for less than a thousand bucks.

I can't think of a better investment for your health and peace of mind.

A few comments based on having gone through prostate cancer as well as observing how others deal with it (or don't).

As much as you need the health care system to make decisions and act, you need to do the same. And there are some kinds of cancer where talking about it is embarrassing, or fear of treatment keeps the patient from proceeding - not the doctor.

Prostate cancer detection for example has it's basic roots in the PSA test (easy enough), but also DRE (Digital Rectal Exam). As things go for exams, it's not many people's favorites and some will put it off.

Next up, say you have higher PSA. You probably will get sent off for a biopsy. Guess where they have to go to get core samples? There are a few routes, but none of them are what one might call fun at all.

So just to get diagnosed, you're going to find people who will put it off or not do it simply because they have anxiety or otherwise are uncomfortable about it.

Then there's the outcomes of the treatments - of which there are many types of treatments. The two big negatives of treatment can be incontinence and erectile dysfunction. That and your penis might be shorter post surgery if you go that route.

What that does is get people who need treatment going from doctor to doctor to find the one that tells them what they want to hear (no side effects). It's paralysis by analysis combined with fear of the not necessarily guaranteed side effects.

But there is one side effect if you do nothing for long enough - you'll die.

So do something - don't let the blocker to treatment be you.

Hear that. Stage3 about 6 years ago. No fun

Thanks for sharing. i hope you get through this.

Thank you for sharing this.

I don't have any personal experience, but doing a food fast seems like a good idea, since cancers thrive on sugar.

Any services that would do this for you?

Here's a big thing I learned from my cancer: Be very careful comparing the results of scans from different hospitals. I had one PET scan done at MD Anderson and one done at Providence St Patrick in Missoula and the later one seemed to show a substantial growth in my tumor, so I brought it up with my oncologist, who, to her credit, was very quick about scheduling both scans to be read by the same person... and the tumor had shrunk. I got concerned over nothing. You get all these nice reports and maybe even images on your MyChart page and you can do a lot of research yourself and you're still not an expert.

On the subject of research: The standard of care changes over time for a reason. Older studies, based on older treatment protocols, will have worse survival rates, and including them in an average will make things seem worse than they are. It's hard to do an apples-to-apples comparison with chemotherapy protocols from before current biologics like monoclonal antibodies existed.

> AIs may downplay the seriousness of things. I was chatting with various models and most pushed me in the direction of “you don’t have cancer” for a while. Just something to note.

I wonder if this is a deliberate prompting to counteract the old WebMD flaw of "Flulike symptoms? You have a week to live" because it takes actual context to understand that a lot of things have flulike symptoms, but for most people, most of the time, in the absence of other evidence, they're caused by the flu.

> You may need to push for comprehensive genetic testing. Some doctors were weird about this and didn’t order it promptly, even after telling me they would. My surgeon, who told me he’d get it done, eventually referred me out to an oncologist. This caused a multi-month delay to getting genetic results, since the first results were done on the surgery tumor, not the biopsy tumor. No one cares more about your case than you, so take control and send lots of follow-ups.

Also, genetic testing is not necessarily going to reveal anything. I had cancer, I got genetic testing, I explicitly opted for the "expanded" version which I was warned might give me results that sounded scary but were inconclusive based on current knowledge and... I got a Variant of Unknown Concern on one gene and that was it. Nobody knows what causes the kind of cancer I had (PMBCL) and the test left us none the wiser.

The documentary Forks Over Knives has a segment about people with cancer given days or weeks to live and they follow a whole food vegan diet and live for much, much longer. The documentary was enough for me to instantly give up meat then, a few years later, go full vegan.

I’ve known a few people who were diagnosed with cancer since then and gave them the recommendation but, alarmingly, they weren’t open to giving up meat at all. Horrible chemo and drugs? Ok. No steak? No.

Visited the MD Anderson cancer hospital in Houston with one friend and was hoping their food court had vegan or whole food options. Nope. Only pre-packaged junk food for me. It’s surreal watching people serve up processed meat and red meat to people battling cancer inside the worlds premiere cancer hospital. I feel like I’m in the twilight zone. I could go full nihilist and say that preventing cancer, or combatting it with cheap food found at every supermarket, would put them out of business. Something to think on.

Edit: totally forgot the scene when we first rolled up, with nurses, doctors and staff outside the hospital smoking and vaping. They work at a cancer hospital. What is happening?

https://www.forksoverknives.com/the-film/

A few things I learned being the hospital for half of this year (this is mostly specific to the US):

- If insurance refuses to cover something, check your insurance site for something called an explanation of benefits for that charge, which should give a clear reason why it was denied. Sometimes though (way more often than it should be) the reason is completely wrong, or vague, or nonexistent, or is just hard to understand, in which case call the insurance and harass them daily until they either pay for it or give you a sane explanation.

- If you go through all of that and they still won't pay, get in contact with whoever made the charge (hospital, lab, doctor, etc), and tell them that your insurance refused to cover it, and that you need to negotiate the price down. This works sometimes. Even when it doesn't work, they can usually get you on some sort of payment plan so that your checking account doesn't go immediately dry.

- In general, get used to spending all your time on the phone calling insurance and doctors trying to get people to take you seriously. This is problematic obviously because you're SICK so generally you're not exactly in a state where you can do that. If you have any friends or family, see if you can enlist them to call people for you. Also, if you can get access to a social worker, sometimes they will be able to help you with calling insurance places and that kind of stuff. If you're inpatient, just ask your nurse for a social worker - at all the hospitals I was in, they had social workers on call for stuff like that.

- Write down on your phone somewhere a bullet list of all of your symptoms, treatments, diagnosis (or attempted diagnoses), etc. You will constantly (and I mean CONSTANTLY) have doctors entering your room who have not even GLANCED at your chart, who have absolutely no idea what's going on, and who will seemingly make all of their decisions based on your answer to the question "so what's going on". So make sure you have a good answer to that, which makes it clear to them that you have a serious problem that is worth taking seriously.

- Adding to that, push each new doctor that comes in for an actual PLAN. Your doctors likely WILL NOT communicate and plan with each other -- treat yourself as the project manager. You are the go-between for everybody. If the neurologist says something, then next time you see the oncologist, make sure they know that the neurologist said that. It is unfortunately your responsibility to lead the team of doctors that cares for you, at least in my experience at a few different hospitals.

- If you have pain, don't be afraid to ask for pain meds, because unless you ask for them, they won't be given to you. Even if you're writhing and moaning in pain, you will either be ignored or given extra-strength tylenol. You have to constantly advocate for yourself and be persistent about getting actual pain medication. Even when they do give you opiates, they will try to give you the smallest possible oral dose unless you specifically tell them "I need this much of this kind, and I need it IV, otherwise it doesn't help enough".

- This includes learning how to use the 0-10 pain scale. If you're like me, your instinct will be to always undershoot your pain number, because yes this is excruciating but I'm sure people who've had full body chemical burns feel far worse than this, so maybe in the grand scheme of things what I'm feeling is just a 5 -- don't do that. The 0-10 pain scale, in practice, is actually a metric of "how much do I need pain medication right now". In my experience, anything from 0-5, even if it really hurts, will not get you real pain medication. 6-7 is like "wow this hurts, it would be nice to get something for the pain", and 8+ is "this is excruciating, I need pain medication right now".

Anyways, good article and I agree with everything there, especially the part about going to a major cancer center instead of your local hospital whenever possible. Just wanted to add some more thoughts from my own experience.

Is there a guide for if you don't have insurance?

The hardest part of cancer is you never really know anything. You’re not sure whether you have the disease, whether the treatments are working , whether you’re clear of the disease. You can’t even be sure that your diagnosis is accurate. There are few deterministic diagnostics . You can start an entire multi-year course of therapies costing a half million dollars, taking decades off of your life, and never know whether it was necessary or helpful in the first place.

Coming to peace with that uncertainty is the only way you can survive it.

And the guys advice to get a second opinion is a false confidence. The diagnostics are primitive and low signal, and they all share the same NCCN guidelines for therapies. Peace of mind has value, but you’re not going to receive any revelations.

> You may need to push for comprehensive genetic testing. > This caused a multi-month delay to getting genetic results, since the first results were done on the surgery tumor, not the biopsy tumor.

I am confused. What does "comprehensive genetic testing" mean here?

Note: I understand perfectly fine the idea of testing. I fail to see why this is required here.

For instance, the blog author differs between surgery tumor and biopsy tumor. However had, a tumor is a clone, by definition; see Henrietta Lacks cells (https://en.wikipedia.org/wiki/Henrietta_Lacks).

I do not understand his distinction here. I don't think the distinction makes any logical sense either.

> Use AI to help you figure out what to pick based on your case.

I fail to see the point here either.

> The rest of the HN comments are worth reading too.

I am not sure about that either.

I understand the issue of cancer being different, and some can kill people quickly (Henrietta did not reach an old age), but I had small benign tumors removed surgically (fibroma of the fatty underskin). No extra treatment was necessary after that (this happened about 15 years ago or so). I understand that benign tumors are very different from metastasizing cancers; my point is more that I don't really agree with the statements made there in general. I think that surgery is a perfectly fine way for many cancers/tumors. It also is potentially very risky and can come in with huge problems. In my case, though, chopping off the small fibromas was the right choice. Unfortunately cancer will hat many people, also differently, so one may never be secure: https://www.cancer.org/cancer/risk-prevention/understanding-...

Risk of getting any type of cancer may be up to 40%; dying may be in between 13-17%, higher for older people. So I am not at all suggesting cancer is harmless at all, but at the same time I would not use that recipe listed on the author's blog entry either. I think the best qualitative assessment I could do is to say "it depends"; and to not rely on AI either. IMO most people should read up on things for a while, does not have to take long, say a week or two of slow, concentrated reading in a non-emotional but objective manner. Then you may understand a lot more. Cancer biology is, for the most part, actually cytology/cell biology. (The cancer chapter in the book molecular biology of the cell is also good; I think even non-scientists will understand most of that via slow reading too. Why does everyone want to succumb to AI here? I don't understand it.)

Aging HN demographics.

It's 2026, we should have a cure for cancer by now, according to Sid Meyer.

Why “when you get” instead of “if you get”. Title assumes we all end up with cancer.

> AIs may downplay the seriousness of things. I was chatting with various models and most pushed me in the direction of “you don’t have cancer” for a while. Just something to note

In the past, misguided research on the internet would often yield the exact opposite. The most innocuous set of symptoms? Oh you have a super rare disease that is found in SE Asia (you lived mostly in suburban America. No travel). Or, you have cancer or lupus.

Frankly, I have the impression that doctors at large put as little care towards their patients’ health as us programmers do towards our software.

Don’t hide it from family, you might just lose time that is rapidly running out. :(

Cancer is quite tough

Many of these things apply to health conditions in general, and some of it's advice specialists themselves gave me. "Do not trust a general practitioner to have the apptitude to manage your multitude of conditions, you hear people say you practice being a doctor using google? You absolutely should.

After what i've been through, I think it's good advice for everyone.

Source: Just a number of issues that ultimately led to outcomes being worse than they could have been otherwise:

"You're too young for cancer (at 25)."

Had cancer in my bowels. Caught very early as I kept pushing and pushing (heh, pushing).

"Your body hurts and you're having problems working because you're stressed from work"

Reality, incomplete spinal cord injury from severe cervical myelopathy. A wrong movement, fall etc could have seen me in a wheelchair at basically any moment. As it is I live with life long side effects I may not have needed too, had someone done the needful earlier.

On reading this, especially the part about scheduling appointments, I am so glad I don't live in the same country as the writer.

I can literally walk into the hospital here, and a doctor/oncologist will become available within a short while.

The shortest wait was 15 minutes and the longest we waited was 3 hours. This was consistent across the 18 months of treatment.

We only had to schedule chemo, which would start within 5 minutes of prep.

How about don't use AI to do any of this and just cut those parts out entirely?

"How to Deal With Getting Cancer If You're Smart and Rich".

I do not expect to be meaningfully employed with a group insurance plan ever again. Guess I'm hosed if it happens to me.

Maybe change the title to mention it's about the US.

Also...

> You may need to push for comprehensive genetic testing.

Why?Cancer is not a condition that develops due to genes you inerited, after all, right? And also - for any cancer? Just some of them?

I just had my 11th year in remission after 2 stem cell transplants. The best advice I can give is you need to be your own advocate, ask questions about everything, clinical trials, what treatment looks like if initial treatment isn't enough. Let me know if I can be of any help or if you have any questions.

> AIs may downplay the seriousness of things. I was chatting with various models and most pushed me in the direction of “you don’t have cancer” for a while. Just something to note.

Hey, could you share one of these chats with the "Share chat" function? This might be of interest to a lot of law students.

Just by being posted here on hn, it will probably be discoverable by anyone that searches for cases where an LLM gave damaging medical advice.

"You can find the “Standard of Care” flow charts for every cancer type. "

This is good advice for any non simple medical problem. Because while you may not have the book knowledge and definitely not the clinical experience you probably can tell when your care is deviating from standard care.

"That isn’t ethics. It’s a skincare routine."

AI slop.

i genuinely not believe that a modern frontier model will argue that you don't have cancer.

yes

When my wife got stage 3 cancer, the doctors initially made the decision that she would get standard chemo, but I had done a lot of LLM-assisted research the weekend before and we had essentially come up with a full decision tree in our heads so we knew that if test results show A, then we want option X, otherwise if B and C, we want option Y otherwise if B but not C, we want option Z... And so when the doctor told us the test results, we understood straight away that my wife had the rarer form of cancer which didn't respond well to chemo and responded well to immunotherapy. So it was a shock when the doctor suggested that she would be put on standard chemo-radiation therapy. Immunotherapy wasn't even mentioned in the conversation. We pushed back and asked for immunotherapy to be considered. We had to wait one additional week for the decision, but they essentially agreed with this course of action. We got lucky because the class of drug we needed was only just made available on the public health system in my country 1 month prior at the discretion of the doctor. Also, very glad we switched to a private oncologist (everything prior had been done in the public health system). So far, it seems to have been a good decision because they did a test just 1 month into treatment and the tumor had shrunk by almost 50%. I struggle to imagine how different our lives would be if we hadn't pushed back.

Her cancer was the exact same kind, down to every detail as the one which was tested in one of the most successful cancer trials in history; 100% success rate of full recovery with no surgery. Also, her specific genetic profile was an exact match for about half of participants in that trial. Essentially she was a textbook perfect candidate for immunotherapy so it's mind-boggling that it wasn't the first recommended option.

OP: fuck cancer. I wish you a speedy and quick recovery.

Lukewarm IQ response

Agreed.

Also many treatments will hasten your death than the disease itself. There is another HN thread posted today: "Do dentists know what they're doing?", the comments are illuminating. Same goes for oncologists - money incentives play a major role.

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.

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.

Some notes from my father's experience over 10 years:

1) Doctors are human and make mistakes or overlook things all the time, so you yourself are ultimately responsible for double checking every result and lab test, following up with questions and getting second opinions when something doesn't add up or make sense. It can be as silly as a radiologist looking for changes between 2 identical images vs comparing with the previous scan.

2) Rare presentations happen. Just because some symptoms are a low probability occurrence, they still happen to somebody, so don't let anything be dismissed due to odds without further analysis or imaging.

3) Palliative care can have a major impact on the quality of life when there's nothing else to do. Nurses were more helpful for figuring out what to ask for than doctors.

When my mother got surgery for breast cancer, she underwent chemo and radiation. Then begun complaining about very sharp pain in her right side ribs. The surgeon decided to remove the gallbladder. Then the pain got worse, she was sent to psychiatric evaluation, which was clean. The whole thing took a year. Finally, they did a scintigraphy: turns out she had a tumour on her dorsal vertebrae that had collapse and fused 2 vertebrae. She went on to live a couple more years until 2017 when she finally died from a mixture of cachexia and opioid poisoning (low kidney function coupled with a morphine injection at the hospital), cancer already had spread from the breast to the spine, and liver. Before all this, when the cancer was presumably only in the spine, she was offered a experimental treatment with radioactive strontium at the Champalimaud center. Unfortunately, we didn't had enough money at the time. I'm pretty sure things would have been very different now, but I would say to anyone with cancer: get a PET scan if you have strange "psychological" symptoms after having had cancer in the past

For every genuinely helpful, medical remedy story on HN, I wish someone would compose the missing part.

It begins with "For the millions of uninsured Americans out there..."

As someone who's dealt with cancer in the family, and also my own chronic illness - if you can, bring someone along to take notes during office visits. It frees you up to pay attention to the doctor and ask questions, and it keeps staff on their toes.

"so use vacation days and book a hotel if you have to"

As someone not from America. Damn.., I can't imagine needing to use vacation days for that kind of treatment.

+1 on getting second opinions at major cancer centers. My father was diagnosed with cancer this year and although we're doing most of the standard stuff locally (chemo) we're traveling to the city (UT Southwestern) for the major stuff. The initial local oncologist didn't specialize in that form of cancer and it was so clear how much the cancer center's doctors (who focus in a specific area of cancer) were knowledgeable about what to do. Some additional tests were able to find other areas of spread that the original doctor dismissed as unnecessary.

We asked a couple MD friends and their first suggestions was to actually get a second opinion at Anderson (Houston) but it wasn't logistically feasible.

I wish you the best!

My partner died of a very rare and aggressive cancer at 32 last year.

Apart from all the technical stuff, my suggestion is to still enjoy the time you have and treat the others as you as nice as you can, and to still keep the good vibes and jokes going. A smile can help more than you think.

We all have limited time on Earth, and at any point in our lives we should be happy with the life we lived so far and ok with the idea that we might die at any point, so if we should always be happy with what we did and have no regrets.

What people surprisingly rarely understand about cancer, is that it's rarely a one-time thing. You don't really "cure" cancer. It's really a battle, often a lifetime one, that takes a high toll on the person but also on the people around. Hopefully new technology can drastically ease this battle, and I think it already did quite well.

It's really important to have a good support system, and also not rely on just one or two people for help that might get burned out if the battle lasts years. It takes a village to heal and support someone with cancer, and having this support makes the journey so much more manageable.

It seems getting cancer is a lot of work. If I ever get it, I would like to have a gamified app that tells me what I have to do.

-'call this number of hospital x to schedule an appointment with Dr y'. (check. Appointment in 5 weeks. Automatically reschedules the task every day to ask if there is cancelation to make it sooner).

- 'you will get your 1st opinion today. In the appointment, get your test results so we can get a 2nd opinion later.'

The app would have built in ai who knows and references 'the standard of care', and knows where to schedule each treatment anywhere in the world.

Hi! Bayli here from Future of Cancer Care Today (the foundation on the last bullet point). We’re a team of scientists who provide education, not medical advice, to cancer patients.

Anyone can book a call for free to discuss potential diagnostics and therapeutics in and outside the standard of care.

Link: https://calendly.com/bayli-sijbrandijfoundation/fcct-introdu...

> AIs may downplay the seriousness of things.

Yes to this. I had a thyroid nodule which I saw many doctors and had multiple tests on. At each step of the process I conferred with AI, and each time it assured me not to be concerned, it's not cancer, etc. The doctors were less certain. It turned out to be cancer. I'm OK today! But something to keep in mind.

Not enough oncologists in my country or anywhere in the world.

Medical oncology is definitely not an attractive specialty.

High stress, poor pay, fraught conversations with often aggressive family members.

Would you want to be the person who is being abused by all the commenters here ?

Neither would they.

That is why ROAD ( Radiology, Opthalmology, Anaesthetics and Dermatology) is so popular.

Also why most doctors kids go into non-medical fields.

My colleagues kids are doing hedge funds, big law, M&A and unicorn billion dollar AI startups, not high stress, poor pay medicine.

Good to see this showing up. One thing that's not on the list that I've found helpful: writing about it. Journalling effectively. My aunt said I should and it has helped others understand what I'm going through and it's helping me process it. I'm not through my journey yet. I hope to be

https://johnnyreilly.github.io/reillys-on-tour/rough-road-ah...

> I started a new folder on my Mac, and after appointments I’d dictate what happened and what the doctor said and have the AI make a new document summarizing things and asking its own follow-up questions for next time. Nice to be able to refer to this over time.

This is good advice for pretty much everything actually. It could be summarized in "write things down". Even if you don’t feed that to an AI, it’s always good to keep a record.

Record keeping is a good idea for any medical thing.

Quite a lot of serious medical things start out seeming not serious, including a lot of cancers. Basically once an ailment seems unusual, like “hmm this is not going away like usual,” start writing down every time, date, and detail you can remember back to when it started. Then keep that current.

Doing this will help the accuracy of your treatment.

There are also a bunch of implicit “timers” in standards of care, like take OTC drugs and rest for a week, then come back if it is still not resolved. Having a detailed precise timeline documented can help skip through those. The doctor may be able to look at the detail and say “ok you’ve already tried the easy fixes, let’s dig deeper.”

Hi! Bayli from Future of Cancer Cate Today.

Anyone can schedule a call for free to talk about diagnostics and therapeutics in and outside the standard of care.

Link to book a call: https://calendly.com/bayli-sijbrandijfoundation/fcct-introdu...

Meaningful.

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.

> If surgery is recommended, I would try and talk to someone who has undergone the surgery. I did not do this and regret it.

This applies to all surgery.

The medical system uses coarse statistics, like "did the condition go away" and "did the patient survive".

"The patient went through a devastatingly painful 9 months and slowly recovered over the course of years to work towards a small improvement in the original symptom" may be classified as a success.

And don't forget that many actors in the system are financially incentivized to recommend interventions.

just lost my mom in law with a multi year battle with cancer. she was very proactive with her health as this article describes.

it's also important to remember that modern medicine, as wonderful as it is, is still limited. your particular type may have x lines of treatment, the cancer eventually mutates, your body can't handle the latter / harsher treatments, and...that's it.

Definitely get the second opinion, examine all the options, find the open minded doctor, potentially try an experimental treatment. That's all good. But there's a certain piece you or anyone can't control, and it's worth sitting with that too. That no matter what you might do, you might still end up at the end much sooner than you want to. My MIL's 5 year prognosis was awful, and she passed between 3 & 4 years.

But there's a CHANCE you might not and you might beat it, or at least live longer than expected. And even if you don't, you will pass knowing you did everything you reasonably could given the state of medicine today. Both of those are worth fighting for.

And make sure you have somebody around that will pay attention to changes in symptoms. My MIL almost died earlier this year because everyone thought her declining symptoms were the cancer. Turns out it was just too much calcium, once they treated she got a few extra months. She likely would've lived longer had they all caught it earlier.

Absolutely go to MD Anderson if you can. Just their staff dedicated to navigating insurance p2p BS to deny coverage for procedures and scans more than justifies the effort and distance. Someone close to me would be dead without them getting a CT scan cleared that signaled oligometastatic recurrence after 3.5 years that would have bloomed by the time they would have otherwise authorized it (9 months later).

Not mentioned: we are getting pretty good at treating many kinds of cancers, don't lose hope!

This is so grim. Why is this a list of things you need to worry about?

I had testicular cancer a decade ago (in Ireland). I found a lump, went to my GP, had a scan 2 days later, and surgery 12 later. Followed by chemo and a RPNLD as was needed.

I didn’t need to chase any doctors, I trusted every doctor I met (had I had AI then I wouldn’t have wasted time with them).

I got a second opinion, because why not, but they agreed with my onc.

Is this some very US coded list that isn’t relevant to my experiences in Ireland?

ps. I’m not sure why genetic testing is suggested here?

> You need to be doggedly persistent on scheduling things

I had testicular cancer 2017, and this is my main takeaway. You have to sell your disease to the doctor. I had a lump deep within my teaticle and was ignored by two doctors. The third one finally ordered an ultrasound. From there it was quick — I live in Sweden, high taxes but we cure people of cancer for around $100.

Cancer sucks and leaves you paranoid after. Most recently I thought I had a tumour in my mouth, and even got the AI reluctantly agree with me. Proved to be a condition called mandibular tori that somewhere along the line of 40% of population has (but the little AI failed to mention lol).

In case you wonder, yes, I only have one testicle, and yes they removed my boy-producing testicle; I’ve had two wonderful smol girls since.

One to add on here (which goes to going to a top tier hospital in the field) is you want doctors that are perform this procedure / surgery / diagnosis multiple times a day / week, not once every few months or years. most of the medical medicine is definitely a field where consistent exposure / practice makes a huge difference. (and yes there is a caveat that to a hammer everything looks like a nail).

> You need to be doggedly persistent on scheduling things. Yes this means lots of phone calls. If you get an appointment a few weeks out, call back a few days later and ask for something sooner and see if they have any cancellations.

> No one cares more about your case than you, so take control and send lots of follow-ups.

Although the advice regards cancer, there is no time-sensitive ailment for which you shouldn't do this.

Never wait around - call, hustle, be polite, and (don't let on but) always assume absolute incompetence at every step (best to be pleasantly surprised when things are handled well, than waste weeks/months because of an administrative screw up or because your case fell between the cracks).

In every response the LLMs keep saying "i am not this i am not that so consult someone". Try yourself.

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.

From the perspective of both individual patients and the system as a whole, the best long term potential lies in more accurate and widespread cancer screening. If it can be detected earlier then treatment becomes much easier and cheaper. The liquid biopsy assays available today still aren't accurate enough to recommend for everyone but they should improve. In a few decades I expect adults to be getting them every few years.

After reading this thread it seems to me that differences in doctors are so vast that multiple opinions are necessary to ensure good care.

If doctors improve (maybe by using better analysis tools), hopefully it will no longer be necessary.

I think it's pretty easy to understand why. When somebody is very ill, they think their illness is the most important thing in the world, and it certainly is to them. But to a doctor, they're just one of the thousands of patients, all of whom think the same thing, that they've seen that year.

And everybody thinks that with perfect medical treatment, they'd be healed, when in reality that isn't the case. Some conditions are simply terminal and the best treatment in the world isn't going to change that. And you even have the equal but opposite happen on occasion. For instance cancer sometimes spontaneously goes into remission even without any treatment, which is going to lead to a rather great outcome regardless of how inappropriate (or nonexistent) the care may have been. Had this happened to Steve Jobs, we could've seen a catastrophic social cascade begin.

Doctors are going to see those odds and outcomes play out, day in, day out.

Re: bedside manner

I found surgeons to be like SWEs personality wise, so there's that.

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.

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.

> Yes because everyone will want to share records / data.

You should really try to have a copy of your own records. Different sorts of clinics may sometimes make it difficult to get a copy of studies, reports, etc. but it's something you should really insist in, to the point of avoiding places that don't give them to you. It lets you have greater selectivity of your healthcare providers by not depending on a provider for access to your own medical data. Resist the lock-in.

Also, providers may not archive your data forever. I've had one that realized my records from a visit some years earlier had been discarded/lost. They would have been really useful to make a comparison.

Having your records yourself, you won't have the need to tell them so they can ask for your records to the other provider on your behalf.

It's a good idea to tell them you came to them for a second opinion after they've already given it, so they can also give their opinion on the first opinion. However, that's different from telling them so they can get your records when you should already have them yourself.

We were blindsided, her cancer was completely removed, but even though they suspected a metastatic cancer, histopathology determined grade 4 glial tumor, idh-1 negative, p16, GFAP positive, Ki-67 20-30%. She then developed oral thrush and had a cough, she was also feeling tired and sleepy, and had swollen ankles. Looking back, these were fairly obvious signs. But the surgeons never warned us about any of it, we attributed the swelling to dexametasone, coughing to her smoking habits, her frequent allergies and sinus problems. She was waiting for the molecular analysis of her tumor before starting treatment. Her state would at times improve completely, and her primary care physician dismissed her after seeing her throat, and the blood work was only done a few days later. By then her CRP was already through the roof. Only then was she admitted to the pulmonology department, and she never recovered, went into septic shock and died a week later. I would say that the first symptoms started maybe a few days before going to the doctor, and I suspect had we gone to the main ER in the next biggest city (where she did the operation), she would've gotten a throat swab and blood drawn at least. It's so sad, because it took only a week or two from diagnosis to her tumor being removed completely by skilled surgeons and she never got a chance to fight it. Croatian healthcare is also such that it's better to drive to the big city emergency hospital directly than to rely on your doctor or small local emergency, usually they are understaffed and just plain uninterested.

I've heard it put this way: Never lie to you doctor, your lawyer, or your accountant.

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.

I read it more charitably. Double check with the LLM because it is pretty good a lot of the time and might uncover some useful insights or oversights. Don't blindly trust what it says, definitely, but use what you get from it to guide further inquiry from reputable sources.

Nah. I'm permanently jaded from an experience I had as a teenager visiting a doctor.

I don't recall the specifics, but there were symptoms of an ENT infection, nothing serious. I remember being concerned about a white lump on one of my tonsils. The doctor's diagnosis? A stuck piece of rice.

No, it was not a piece of rice. It was a tonsil stone. It happens almost every time I get sick. And I guarantee that if I shared my symptoms and a photo with AI, it would render the same conclusion.

Would it be dumb to blindly trust everything a model says? Sure. Should you trust it alone, especially for major issues? No. But having received such a stupid and brain-dead diagnosis from a supposed "professional" doctor in the past, I would never give them the automatic benefit of the doubt.

No one advocated "putting your healthcare decision in the hands of an LLM." Answer the post that was written, not the one you rewrote in your head to conform to your biases.

Current frontier LLMs are incredibly powerful diagnosticians. They will generally give you the best assessment that can be made on the basis of the information you include in the prompt. So it's important to make sure that information is accurate, and also that it's phrased well enough to allow the model to weigh the importance of each detail.

Unsurprisingly, the same tips are important when communicating with your actual doctors.

Seems like an odd place to put this comment when second opinions are essentially low trust behavior which is seen as a good.

There’s a mental clarity and purity in fasting

This is the correct question. It is very hard to fathom how a healthy mind could produce these thoughts. Qi Gong is just as obvious horseshit.

I used the doctor's words. I had them chart EVERYTHING and got a copy of the chart. I then highlighted the oddball items and wrote out the history of cancers in the family. I also showed that the family member had no history of back problems, no abnormal development to cause it, and hadn't done anything lifting or otherwise to cause it.

And then I sat in the nurses station until the doctor finally took time to listen. They threatened to get security, but I just kept my head and kept pointing at the things the doctor himself wrote.

I didn't try to interpret anything, I didn't do any diagnosing myself and I didn't try to act like he didn't know what he was doing. I just kept saying that it was more serious and we needed a second opinion.

Does that help?

‘there's nothing to suggest eliminating meat can help combat cancer or increase survival rates.’

Watch the free documentary and you’ll see.

This is exactly correct- you have to sort of pretend to be passive and let them come to conclusions first, then sort of question it logically.

One bad side effect of coming in with your own self-diagnosis is sometimes they will index on that and stop considering other possibilities they would have suggested if you hadn't primed them with a diagnosis.

Yeah, while what I wrote was true the takeaway should have been something like:

- You should pressure test anything an AI says with your doctors, and anything a doctor says with AI.

Yep! It’s pretty simple. Just dates, events, records with some loose links between them. Charting for the kids’ growth, and our blood test results and prescriptions, vaccines, and so on. It’s primarily hooked up to our personal agent over LAN so we just say X and Y happened.

And I pull records from my chart etc using the data export periodically and use an importer.

If I’m being honest, it’s more that it scratches my itch to document than that it is useful.

A doctor is supposed to do an anamnesis each time it might have some consequences. This is not because they are stupid, or thing you are. People simply have error rates. Just because he wants to hear everything again from the beginning, does not mean he hasn't read your file. He want's to make sure, nothing got lost or forgotten including by the patient himself. And he is actually supposed to do so, if he doesn't that's bad practice.

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.

Device wise - i never found one as good and i played with a bunch. However, you have three options with plaud that i'm aware of:

1. If you want something totally open source: https://github.com/RemiPelloux/OpenPlod

Local-first Plaud Note Pro recording vault, transcription, and Markdown workspace. Which sounds like what you want.

2. the Plaud SDK will let you pull from the device and send it wherever you want without touching their servers.

3. You can also use the mobile app, disable cloud sync, and export each audio file as mp3/wav to your phone/tablet/whatever if you don't want to use #1 or #2.

You can have it upload to your private cloud without doing any of these, but it still transits their servers first i believe, which it sounds like you are trying to avoid

Between November 2024 and January 2025, I visited liver surgeons at 4 different hospitals in 4 different states and got 3 different opinions on what was the correct next step for my cancer treatment.

I don’t regret it.

I've had a couple of second opinions for far less serious stuff in recent years. In both cases the original doctors suggested major surgery pre-emptively, even though they were very different types of thing.

In the first case, I decided to talk to an expert in the particular area who then ordered different tests. These indicated the issue had actually gone away completely, and I avoided surgery as a result of those.

In the other, a grade 2 ACL tear, it was less clear-cut, but I felt like the explanations given by the second doctor as to why he'd recommend against surgery were clearer and made more sense to me.

I'm glad I got both second opinions and the first case in particular, made me much more likely to get second opinions in future as well as more confident about doing so.

Yes you get a 3rd, 4th, 5th opinion! Until you understand what the consensus seems to be. This is serious stuff.

I 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.

You were asking about individual mutations, like SNPs or small indels?

Very few diseases are caused by individual mutations like that (typically only monogenic Mendelian). Individual mutations typically cause an increased propensity, or severity, rather than being the sole or root cause of a disease.

There is only one thyroid ... presumably you're referring to the two lobes.

There are generally clear discriminators determining whether a lobectomy or total thyroidectomy is called for. What is missing here is the detailed discussion with the two doctors of exactly why they were recommending their course of action and what attempts were made to reach consensus. "everyone wanted to believe" is not the way to go about such things ... but there's a good chance that the evidence favored the less radical course. A lobectomy has considerably less radical consequences and so is strongly preferred if a total thyroidectomy isn't indicated. But it's not uncommon for the pathology report of the removed lobe to indicate high-risk features that call for a "completion thyroidectomy", which is what your ex-wife had. It's not some nefarious conspiracy to make more money.

BRCA is one risk factor for certain cancers. You can get genetic counseling to understand your cancer risk looking at this and other markers.

In this context, though, we're talking about measuring the actual cancer (including the tumor's mutations) to determine what therapies it is likely to be responsive to.

e.g. this: https://www.cancer.gov/about-cancer/treatment/types/biomarke... not this: https://www.cancer.gov/about-cancer/causes-prevention/geneti...

Indeed, there are some cancers with a hereditary predisposition. But they are quite rare and such genetic counseling is usually only indicated when there is a family history of the disease.

For the vast majority of cancer patients, generic testing means somatic testing for tumor markers.

There’s this idea that a false positive means screening is not working; it’s part of why health systems argue against screening at all.

See fights over: mammography, serum PSA, Lung cancer screening, colonoscopy, etc.

I wouldn’t say most frontline doctors are personally against screening, but they hate fighting with insurance companies over this stuff, and would rather not deal with it.

Prenuvo is nice but really expensive. You can do this way cheaper in Asia.

This Mirovita (https://mirovita.com) one looks decent. Anyone try it out yet?

I’m curious: why isn’t a “second opinion” included in the standard medical protocol?

As an engineer, embedding such a check step (basically a PR review for your body!) in the standard workflow feels very natural. But in the medical context, getting a second opinion usually needs extra effort by the patient and often involves awkwardness.

It feels involving too much friction given the high stakes. What is your opinion on this?

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 think it's a truism that naive computer science people who have watched the rise of computers, the internet, and AI will always believe that curing diseases is a straightforward process and that new tech will rapidly fix all the old problems.

The folks who actually go work in the field, understand the structural problems, the costs/benefits, and the long slog to bring successful treatments to patients are skeptical. But we're still more than happy to be proved wrong- if Anthropic (more than OpenAI) is working on life sciences and drops some amazing information that transforms cancer care with massive positive results, we all win.

AGI isn't magic. Not even an excellent oncologist can reliably diagnose you without actually looking at you first.

What do you think AGI means? ANI would arguably be better here.

Let’s see: do I take the findings of the worlds largest study of nutrition, run by actual doctors, or the word of some rando on the internet?

That’s a tough one.

It's not unique to America. Specialists are in high demand everywhere and seeing them means you have to pass through a screen of generalists who first rule out all the common explanations for your symptoms.

But GP's point is otherwise true. It's just a job to them. They see dozens of sick people every day. There's no way to be empathetically engaged with all of them or really any of them and still be effective. It's not personal, and they aren't ignoring you. You're a bug report in their ticket system. Understand that and you'll be able to deal with the system more effectively.

What other countries describe is the equivalent of your public health system. If you're willing to pay out of pocket, like you describe, you can have a similar experience in the US. However, that can get expensive quickly since you normally don't have just one appointment with a vascular neurosurgeon.

For most things, I can do the same in the US. It has a lot to do with your insurance provider. E.g. UnitedHealth is pretty well known for requiring pre-authorization for every little thing. But BCBS, which is who I have had most of my adult life, is far more relaxed about it.

A lot of of specialists will _only_ take patients by referral unless you can prove you have the condition. This was my struggle. I had to wait and wait until my doctor specifically referred me to that doctor. I called before he did and they wouldn't even give me the time of day without a diagnosis.

More common specialists you can just book with. I got an appointment with a cardiologist with no fuss.

Indeed. Your point?

What are you talking about?

This is done all the time, and is quite common, particularly when care is shared between multiple people or people are elderly

16% of all appointments are recorded by patients, and the number is increasing all the time. It's up like 20-30% year over year. Only 3% of those recorded are done covertly.

Basically all medical associations have issued guidance on this and the guidance is not "kick people out of the office"

I have never once had a provider become hostile or care. Nor has anyone I know. People record with phones, dial people in, etc.

This is across like 10+ states, tons of conditions, ages, and hundreds of people.

While you may have had a different experience, i dont' think i would go with "don't ever do this". It's happening in almost 1 in 5 appointments, and increasing all the time.

Gemini says what I think makes sense (there are multiple responses which could make sense)

[ if I gave you a picture of something on my skin could you diagnose it as a melanoma ]

No, I cannot diagnose skin conditions or identify melanoma from a photograph.

AI-based image analysis cannot replace a professional medical evaluation. Skin conditions—especially potentially serious ones like melanoma—require a physical examination, and often a dermatoscope or biopsy, by a qualified healthcare professional such as a dermatologist.

AIs often keep blabbering "ask a doctor" after every medical question and I absolutely despise this behavior.

99% of the time I'm asking the AI medical advice questions because (1) there is no specialist available on short notice (2) most specialists I actually see do not give me the sense they take things seriously enough (3) a lot of specialists are just incompetent.

> Or should it say it can't be sure and to ask a doctor?

It's an extremely slippery slope to having it say that about even the most basic medical information.

If you don't believe me, try any google search related to something as simple as hangover tips. The AI summary will tell you to call SAMHSA and then brutally stonewall you on anything else even tangential to alcohol.

Hot take of the year. It’s not the meat, it’s the potato salad. Stick to your day job and leave the cancer studies to the professionals.

> seed oils

Oh dear, someone gets their health advice from streamers and podcasters rather than actual health professionals.

The seed oil thing is nonsense.

> Eating clean proper ruminant meat will not be bad for you

Eating too much beef is bad for you in a variety of ways, it's associated with high blood pressure and high cholesterol, cardiovascular disease and type 2 diabetes.

It's frickin' delicious, but it's not some panacea superfood, quite the opposite.

Your argument is that the companion book to the documentary, written by a ghostwriter who is not a doctor is not biased? Okay. I'm glad you liked your book. You should read actual research and not watch/read this biased BS

I've made plenty of lifestyle changes over the years based on actual research, the most recent of which was cutting down saturated fat which cut my LDL cholesterol by over 50% in 6 weeks. But I don't put much stock in these documentaries that are incredibly biased. Only stupid people can't see just how biased they really are. They are created just to ride the plant-based diet trend to make money, don't you see that?

Also it's funny because you know nothing about my lifestyle but you are attacking it just because I don't follow a strict plant-based diet. You are in a cult and you don't even realize it

The average white collar or knowledge worker in my 3rd world country can usually pay for mid-tier private medical care, including specialists, without any problem.

Of course the top tier private hospital and specialists can be pretty expensive, but is not that expensive to avoid the public/government health system.

What's disgusting about the suggestion?

That’s definitely one way to look at it.

I would just say that ‘dangerous’ is relative and when the standard of care leaves effectively no hope, your tolerance for risk can change. Yes this does increase that chance of shortsighted decisions or manipulation. That just comes with the territory, I’m still very appreciative that we have the option to elect to participate in the peocess.

I think because trials take so long, the probability might be higher than you say.

All ground-breaking treatments/therapies were initially only available as a clinical trial.

> You're banking on there being a significant shift in technology/knowledge that occurs right between the time you are diagnosed and the time you have left to treat it. Just as a Bayesian probability, it's extremely unlikely to be the case.

The probability that I think you're talking about here is not actually relevant, given that the trial is already underway. Basically, the "potential advance" event has already happened. (Similarly, the probability of getting shot by an arrow is not relevant once the arrow's already poking out of your body.)

Given the trial is already underway, the probability that matters is the fraction of treatment candidates at the phase you are considering that make it all the way through; for phase 3 trials, this is 58-65% [0], which is actually pretty good. Of course, rates for earlier phases are much worse because there's attrition at each phase.

0: https://patentpc.com/blog/clinical-trial-success-rates-how-m...

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.

Not sure if I want that to be honest. I could surely be 6-7kg lighter, but I would lose strength that has taken years to build. My height is 185cm now.

Whether you need a referral typically depends on your insurance plan, not the doctor you want to see.

Yes. They don't have time to deal with hypochondriacs who just show up. Unless you are an existing patient asking for followup, or have a referral, many will not schedule you or will maybe give you an appointent six months from now.

Its not misinformation if its true. I specifically called out seed oils, since cutting that will basically cut most of the things that is bad in the modern diet. Its hard to find ultra processed foods without it here in my country. Even some soda has it now.. Its obvious that there are many factors, but starting with removing seed oils and sugar will make the biggest impact since so many other options has to be removed then.

Your list is true if you remove red meat from it. Obviously no people should be smoking, drinking, using plastics around food, do some gym or other fitness daily .. and so on.

The point is exactly what I said: “doing something”, in this case, is not the same thing as “saving your loved one’s life.”

> Your other option is to do nothing and die

I really don’t want to be this blunt, but I don’t know how to say it any other way: death is not an option. When you’re at the stage of clinical trials for cancer therapies, it is the inevitable outcome. Otherwise, you wouldn’t be in the trial. Maybe it extends the inevitable, maybe it doesn’t. The odds lean heavily toward the latter. And there’s also always a cost.

I’ve lost friends and family to cancer too, and watching people you love torture themselves with ineffective (or even minimally effective) treatments is agonizing.

When it comes to clinical trials, you need to start with the cold, hard reality that you’re doing an altruistic experiment with the remaining portion of your life. There are lot of people who don’t understand that, and see trials as some kind of back-door to better treatment.

I meant “order” in the clinical sense: e.g. you have to involve a clinician to get more information.

An LLM might be great for summarizing that wealth of information for a doctor to consume, but it won’t compete with a doctor’s judgement or knowledge of their practice and institutional knowledge.

LLMs, even at their theoretical best, are limited to publicly recorded knowledge. If you want to know how extremely limiting this can be, look at the surgical outcome rates of surgeons by educational experience, vs outcome rates from surgeons based solely on experience. Surgeons with more experience have far better outcomes than those with any other attribute.