Things to know when you get cancer

runjake

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.

jijji

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.

trvz

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

akshaydeshraj

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.

iyonn

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

sieste

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

baoooooooooooo

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.

ValueTheory

> 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".

silvestrov

> 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.

sehugg

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.

baggachipz

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.

zetazzed

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.

exhilaration

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.

stochastician

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.

wnevets

> 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.

Traubenfuchs

> 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.

going_undercove

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.

amoorthy

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.

cabernal

Any services that would do this for you?

prometheus1992

Thanks for sharing. i hope you get through this.