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.

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.

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.

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.

> 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.

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.

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.

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

> 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.

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.

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?

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.

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.

> 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.

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.

> 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".

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.

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.

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.

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.

> 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.

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.

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.

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.

Thanks for sharing. i hope you get through this.

Any services that would do this for you?

"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.

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

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

[dead]

> 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.

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.

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