Things to know when you get cancer

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.

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.

My wife was diagnosed in February with stage 4 invasive lobular breast cancer, peritoneal carcinomatosis with complete bowel obstruction. Surgeons gave her a couple weeks to live.

We went through enhertu which worked for about 3.5 months and relieved the blockage and she was able to eat again and get off IV nutrition. It obstructed again and her markers rose sharply in the summer, we did a course of taxol and are moving to trodelvy next week.

All of this has been entirely predictable, standard of care patterns.

But the standard of care for my wifes disease right now is a march toward death and I refuse to accept that.

I spend my every evening talking to every LLM, practically bargaining and begging for one of them to give me a thread of hope.

I appreciate this service and we will check it out. We are desperate to find something, I recognize ILC is tricky and complete obstruction is usually a death sentence, but we have to try right? She is 49, we have 4 kids.

Anyone out there, any ideas...any longshot, we will do anything.

Had a family member recently go through unexpected major surgery.

One thing I would mention:

You are not dealing with a monolithic entity with regards to a hospital.

There are really multiple groups with oftentimes competing interests e.g.

- case manager wants you out and home b/c that is the best "score" for the hospital. They also DO NOT want you to qualify for Medicare if you are a senior b/c, again, "score" gets dinged if Medicare gets involved

- surgeons want you out as they don't want you to pick up hospital infection. They want you to go to a rehab facility as that will more likely lead to a good outcome

- the hospitalist wants you to be stable in the short term so will pump you with whatever medications are necessary to get you "back to normal" without addressing any root cause

- the nurses generally care about you as a person as they deal with you the most but oftentimes have the least amount of say over your case

- in one of those perverse incentives/unintended consequences: if you do TOO well on a physical ability test, that might disqualify you from certain coverage even if you are below the threshold on other ability tests. That can have gigantic insurance implications.

This is prompting me to write my own version of the OP blog post.

I have colon cancer. It's been a hell of a journey and my outlook is... not great. To me, this list seems practical but not profound.

It doesn't prepare you for all real stuff: you need to get ready to die. You need a plan for your trust, your estate, your funeral, and how your family will deal after.

You should have these plans in place before cancer because you could get hit by a bus. (I didn't because I'm stupid but maybe learned a few things the hard way.)

The 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.

Really interesting reading this, because I went through my partner having cancer a decade ago, in a nordic european country, and the experience is very different.

They rolled out the red carpet for us, they gave us everything, we essentially had a direct line into the oncology ward. They also gave us all the meds we needed. At one point we wanted to go to SE Asia and they gave us twice the meds we needed for an entire month so we could mail one half, and take the other half with us, with doctor's notes, as redundancy!

And no we didn't pay a dime for any of it.

But if you don't have cancer, then I agree with the first statement of the blog, you really have to act as your own project manager when it comes to health care.

My wife was diagnosed with breast cancer last year, got a therapy, an OP... Difficult time, but manageable. A lot of scheduling this and that. Unfortunately, there was an MRT scan last week, and a CT scan yesterday and it looks like we may be facing also a lung cancer now. But, those 5 months between the end of treatment and the new phase of doom and gloom were nice and almost normal. Unfortunately, one has to accept that there is no proper healing from a cancer in many cases, one is just living on borrowed time. We knew it, just hoped it would last longer.

Stay healthy and have best luck possible!

As a caretaker to my husband who had cancer and is now in remission, here are some caretaker tips:

- Take it one day at a time

- Schedule time for yourself fairly often to do things you like that are away from treatment and away from your home

- Prioritize sleep!

- Set up a meal train so at least some meals are taken care of. We prioritized chemo weeks for our meal train

- Make a countdown to important milestones. It's okay to wish this time in your life away

- You will feel lonely. Have some friends you know you can call

- Find a cancer caregiver support group. Other cancer caregivers "get it" better than others

- Celebrate the milestones, all the time, forever

This is fantastic. Thanks for posting it, JJ. There's a very strong chance you'll save n>0 lives by posting this.

Minor addition: When you talk to someone who has undergone the surgery, try to find someone that's a similar age and in similar shape to you, otherwise you may get wildly varying answers.

You'll respond, experience and heal from a surgery quite differently at 40 vs 50.

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

This is certainly another data point for "never trust AI chatbots".

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.

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.

jakeseliger.com

bessstillman.substack.com

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.

I'd be happy to go into more detail.

My dad died of cancer last year, and I miss him so much. I tried to maximize the time I had with him because I know from the beginning it would be very limited. Once he was diagnosed with cancer it had already progressed quite a bit, it had metastasized but the primary tumour was not found anymore. He was treated by a good treatment center and four about a year and a half he still could do a lot that he enjoyed and there were ups. But the last month was very intense and his condition worsend dramatically. It is so sad to think about.

Care for your loved one and spend time with them. Don't skip medial appointments and get checked regularly. Learn doing self assessments and do them regularly.

Good advice. As someone for whom this is currently relevant, let me add "find a support group".

At least, if it's a common cancer, a group will gather accumulated wisdom and can research better than a single person.

Also, they can help more with practical questions, like financial aid, how to manage sleep and pain, etc.

> 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.

Plan to go to Houston, TX is my only advice. Houston has the MD Anderson Cancer Center. It is the highest rated cancer center in the world, if I'm not mistaken. They also do the highest number of cancer-related clinical trials. MD Anderson is also in the Texas Medical Center, which is one of the most well-concentrated hospital networks in the world. People from all over the world fly here for cancer care.

If Texas isn't for you, Memorial Sloan-Kettering Cancer Center in NYC is the next best bet AFAIK.

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.

It’s been six years since my mother passed away from pancreatic cancer. I was 17 at the time. Fortunately, my parents had already thought of and done almost everything suggested here.

One tip I don’t see on this list: if you have cancer, always bring someone with you to medical appointments. They can ask questions, take notes, and support you emotionally. It’s hard to take everything in when all you can think about is the fact that you have cancer.

> You may need to push for comprehensive genetic testing. Some doctors were weird about this and didn’t order it promptly, even after telling me they would.

Honest question - when physicians steer their patients, do they have any specific instructions or obligations with regard to who and what they are optimizing for?

For example, if you visit any online space where (self-reported) physicians are sharing their opinions on any of the newer self-paid testing services (e.g., Function Health blood testing, Prenuvo MRI scans) you'll clearly see some of their internal calculus around why these services are good or bad. The thing that I've been surprised by in the past is that the "impact to the system" often comes up as a reason not to use these services. Yes you the paying consumer might learn something about yourself, but it's a bad idea on the premise that you might be crowding out someone who needs the care more than you do.

I can respect that point of view, but if that is part of what informs a physician's recommendation, it should be clear and explicit. Is this something that any code of ethics covers? Optimizing for the patient in front of you first and foremost?

Is there adverse selection in reports of the callousness, incompetence and greed of US healthcare providers?

Three years ago, of necessity I became a big-time consumer of healthcare[1] and I can't believe I just been lucky that nearly all my doctors seemed reasonable and effectively treated me. Of the dozen or so doctors I dealt with only one left me with a bad feeling.

[1] Stage 4 renal cancer, successfully treated with immunotherapy and surgery at Perlmutter Cancer Center in NYC.

Summarizing what the doctors said is fine, but please do not rely on LLMs for medical advice. As someone here helpfully pointed out, bringing someone along and having them take notes will do wonders for followup questions and research down the road, but please use existing sources. LLMs can explain a diagnoses, but cannot reliably CHOOSE a course of action. Doctors make mistakes, but they also are legally liable, through malpractice and certifications, for their medical opinions and treatment. LLMs are not.

There are many good resources out there that will not gloss over important details, and have experience (hard-earned) behind them.

Best of luck to the author and everyone dealing with it, stay strong!

Extremely sorry you had to go through this.

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.

> You may need to push for comprehensive genetic testing.

Not cancer, but after over twenty years of anti-depressants of all shapes and sizes my latest psychiatrist recommended one of genetic tests and it turns out I’m missing some enzyme that is supposedly needed for the meds to work.

Bitter sweet to find these things out so late in life, but better late than never.

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.

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.

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.

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..."

> 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.

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

"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.

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.

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...

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.”

“Check out all the resources and materials at the Sijbrandij Foundation. Sid (GitLab cofounder) took matters into his own hands when standard of care ran out. Schedule a call with these guys. They are great and have good materials and questions to ask your doctors.”

Thanks for your kind words about FCCT from the Sijbrandij Foundation. We help people look beyond the standard of care for cancer. Calling with them is a free service.

+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.

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.

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.

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?

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).

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).

> 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.

> 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.

> 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.

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.

> 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).

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.

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.

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.

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.

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...

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.

> 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.

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.

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.

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...

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.

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.

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.

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.

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.

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

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

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

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

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

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

> 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.

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.

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

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.

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

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

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.

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

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

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

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.

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.

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.

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.

What were the signs for you to get checked out?

Hear that. Stage3 about 6 years ago. No fun

Thanks for sharing. i hope you get through this.

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.

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?

Thank you for sharing this.

Cancer is quite tough

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.

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 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/

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 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.

Aging HN demographics.

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

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

> 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.)

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

> 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.

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

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.

"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.

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.

yes

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.