Posted by jjmaxwell4 2 hours ago
My mom was diagnosed with stage 1 cancer in 2006 in Idaho. I was a PhD student at MIT at the time and a friend in lab helped me get an appointment at Dana-Farber. I thought it was probably overkill (it was a common cancer) but we did it anyway. They said everything in Idaho was standard of care but suggested one extra test, which Idaho team then reluctantly did, which revealed distant metastasis (stage 4! ), dramatically changing her treatment trajectory. She lived another 15 years (I miss you Mom).
Asking for a second opinion sucks. A lot of us are preconditioned from birth to trust our clinicians. But you're going on a journey and your life (or the life of your loved one) is on the line. Insurance often covers it. Your doctor will NOT be offended.
Think of it this way : if you were deploying code to the mars rover, and your colleague asked to do a code review before you pushed go, would you be offended? This is even more important than that.
Anyway, I would say I actually had relatively positive experience with Thyroid cancer. I had been seeing my Endo for 10 years at that point since I had hypothyroidism. His nurse was on top of everything. Very calm and reassuring during the whole process.
But all my experiences with the healthcare system outside of that were just disappointing. I had RCVS 2 years ago and I was in the ER and the radiologist summarized the report wrong even though he has read it correctly. They were starting me on stroke protocol and giving me these drugs but I had ChatGPT read it and it was like this is wrong. It's supposed to say no significant stenosis in the neck. It actually said significant stenosis in the neck. The dr reported it immediately and the radiologist corrected it. What a shit show. No one could even give me a straight answer on if I could go back to exercising or when I can get off a medication. Every doctor I saw was completely different. Have a few other stories like that pre LLM's. But you have to advocate for yourself. And always double check the doctors with LLM's now a days.
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 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 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.
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.
People can't ignore you as effectively if you're in their physical space. When it comes to your health or the health of your family, do not back down. Doctors are used to nuts who googled the symptoms or joined a Facebook group and have all the answers already. Make it clear you have NO answers but NEED them asap.
One of the things I've learned is to apply the Socratic method, preferably in front of their colleagues if they try to brush you off. Also, if you've got scary symptoms, demand they write down what your symptoms are on your record and why they aren't concerned, then demand a copy of all relevant records (it's your property) -- this often gets them to reevaluate your risk in terms of their career.
Worst case scenario, you can make up medical history. I had a family member pass recently from colorectal cancer. They had symptoms but their PCP kept insisting they were too young. My family member suddenly "remembered" her aunt died of CRC when she was a kid. This got her referred to a gastroenterologist, and they found out she was stage 4...after her PCP delayed her diagnosis for like a year. She actually had grounds for a malpractice suit but who's got the energy or money for that when they're fighting stage 4 cancer?
Also, know your state's agency responsible for policing health insurance. This family member's insurance company routinely tried to deny life saving procedures, but a call to the right govt agency set them in line each time.
Here in Mexico, i can get to doctoralia and make an appointment with a high specialist , like a Vascular Neurosurgeon. All by myself. The first visit will to maybe $200 usd (and that's very high) and normally it's a week away at most. No waiting on the private health option.
Of course if you go with public health, it's a disaster and a shame.
A good shorthand is that unless a doctor has positively identified something through imaging or biopsy do not trust them when they tell you what something is or what to do about it.
If you aren't sure how best to advocate for yourself, use AI to help figure out what tests and referrals to ask for. You might feel like a jerk, but don't expect anyone to care about you more than you do.
The next important one is to find the best doctor you could afford. I didn't have a lot of faith on my local oncologist, especially when he said that my cancer (nasopharyngeal carcinoma) is rare and had not much experience with it. I was able to get ahold of the chief surgeon at UCSF, purely by luck. Felt a lot better when he said that this type of cancer is pretty common for south-asian descent. He has dealt with it quite often due to a large concentration of asian in the bay area.
The treatment sucks, but small price to pay considering I can spend more time with my family.
Don’t forget, Doctors are just well read mechanics
Oh my. I did not expect this.
I'm glad you caught it early, and I hope you have the best outcome you can, and thank you for sharing your story.
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.
The exception to this rule is if you are in an HMO like Kaiser which force you through "level one support" (your GP) or if the specialist is so busy they require a referral to screen out the social media schizos.
Canada introduced MAID for this reason.
No they didn't.
There are tons of specialists in Canada. You're talking out of your ass.
You’ve dealt with every health system on earth as a patient?
> There are no specialists in all of the government-run systems
This is completely inaccurate. Every government run system has specialists.
Everything you have said is incorrect.
That doesn't sound great to me (read: broken), because it means its not evenly accessible across your society. I wouldn't count that as a good system to be honest.
I have limited experience with the New Zealand and Japanese medical systems, and from a similarly arms-length engagement with them, I think I would prefer them over everything I've read about the US system. You still have the same issues with having to advocate for yourself, but you can at least get access to good healthcare across the board - and if you go private (which as a late 30s / early 40s guy, cost around NZ$60 / month), you can get access to care at private facilities much faster than via public.
It is most definitely imperfect, but it _is_ designed to be accessible to everyone.
You read that where? What evidence do you have? In my experience, Americans are often blissfully unaware about how poor their health services are.
As someone who has seen many health services up close (from founding a health tech company and literally visiting myriad health establishments around the world, over the past few decades), the US hospitals and clinics always struck me as the most run down. But as soon as I walked in the boardroom at UHG or HCA, it suddenly all became a lot more glamorous.
And whilst the US does ok with cancer outcomes, so do other nations like Germany, Switzerland, Japan, South Korea, Singapore, Canada, and the United Kingdom.
Most advanced nations have universal healthcare with similar outcomes to the US, but for significantly less money. They also don’t leave citizens destitute for having the unmitigated gall to impose an unexpected health emergency on themselves.
The US system funnels profit, it doesn’t provide better healthcare.
In the rest of the world, it's controlled by extended wait times. In the US, it's cost. You can have moral arguments about what's fair, but that's the economic reality.
At the time I as studying this (early 2010's), the average wait time of diagnosis to first treatment for breast cancer in the US was 12 days. In NIH, it was 5 months.
I should have mistrusted the doctor and trusted the AIs more, unless they gave me compelling reasoning. Don’t give up your decisions to anyone, incompetence is abound.
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.
jakeseliger.com
bessstillman.substack.com
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.