Things to know when you get cancer
jjmaxwell4.comMinor 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.
Note untested medicine is untested.
> PNC-27 is an anti-cancer peptide that in small in-vitro studies has been shown to induce tumor cell necrosis.
What's the difference for a physician today vs. 30 years ago? Among other things, today's physicians struggle because they're being crushed: continuously squeezed by the financialization of their hospital/practice, carrying larger debt, more time spent fighting the insurance machine just to get basic treatments approved. On top of all of that, they are less respected in general and often face outright hostility from patients... all while being paid relatively less than their predecessors.
The comparison rankles, obviously.
To your point, it's hard to imagine any human dealing with the conditions a lot of doctors face then showing up the way we want them to all day, every day. But how much suffering are patients supposed to absorb to subsidize the stress budget of their doctors?
I wouldn't go as far as drawing an analogy here, but it reminds me of debates surrounding police violence in high stress situations. Is there a higher standard when you're accountable for other peoples' lives? Are you off the hook or is it on you, and not the people you serve, to fight systemic and situational problems that make it hard for you to do your job well?
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.
If this is maligning the system I'd love to know. They said faced with excess costs to go private in Oz for a condition or fly home and get treated in China, they'd stay here. The net cost might well be similar.
jakeseliger.com
bessstillman.substack.com
The first cancer-related post - https://jakeseliger.com/2024/05/25/the-one-year-anniversary-...
Bess is an ER doctor, but even with all that medical knowledge, navigating cancer care seemed difficult.
So those with no medical knowledge from themselves or family or friends may have a much more difficult time.
If I ever get such a disease, I have it in writing with my family that I will not seek any treatment after the first recommendation, I will not do experimental treatments and I will not prolong a life of suffering. Rather go out under my own terms.
I'm forever grateful to Jake for writing his experiences in such detail and candidness.
It is only by giving people too much and too little chemotherapy that humans figured out the dosages and regimens that optimize survival and minimize relapse rates.
I think about it a lot when I see kids in the pediatric cancer ward, and what decision I would make for myself, versus the decision to subject a child to very painful treatments to kill the cancer. And how mine only has a good prognosis because so many others went through hell, and didn’t survive.
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.
I was hospitalised (not cancer) and completely zoinked out of my mind due to sleep deprivation, constant blood loss and being in pain 24/7. People did visit, but I guess they just thought... I have things under control? I wish they had talked to the doctors and asked more questions. In the end I came out of it fine, but I probably would have gotten a better result with someone advocating for me.
Please go and be a nuisance. As someone with a clear head you will likely be able to understand the topic better, from a more neutral standpoint, and potentially push for the best possible treatment.
This is certainly another data point for "never trust AI chatbots".
Doctors might do the same thing, of course, but at least then there's a real (accountable) person responsible for deciding that "threshold."
It's an extremely slippery slope to having it say that about even the most basic medical information.
If you don't believe me, try any google search related to something as simple as hangover tips. The AI summary will tell you to call SAMHSA and then brutally stonewall you on anything else even tangential to alcohol.
[ if I gave you a picture of something on my skin could you diagnose it as a melanoma ]
No, I cannot diagnose skin conditions or identify melanoma from a photograph.
AI-based image analysis cannot replace a professional medical evaluation. Skin conditions—especially potentially serious ones like melanoma—require a physical examination, and often a dermatoscope or biopsy, by a qualified healthcare professional such as a dermatologist.
99% of the time I'm asking the AI medical advice questions because (1) there is no specialist available on short notice (2) most specialists I actually see do not give me the sense they take things seriously enough (3) a lot of specialists are just incompetent.
Oh, it absolutely can. If it's bloodwork I can absolutely get that done through Function Health or similar platform without a doctor's order. If it's imaging I can fly to another country and get it done faster and cheaper (including flights and accommodation) than the insured price in the US.
I also give the AI access to all my medical records at 6 institutions in 2 countries over the past 15 years, and it draws upon that context. Doctors don't usually have time for that.
An LLM might be great for summarizing that wealth of information for a doctor to consume, but it won’t compete with a doctor’s judgement or knowledge of their practice and institutional knowledge.
LLMs, even at their theoretical best, are limited to publicly recorded knowledge. If you want to know how extremely limiting this can be, look at the surgical outcome rates of surgeons by educational experience, vs outcome rates from surgeons based solely on experience. Surgeons with more experience have far better outcomes than those with any other attribute.
I vehemently disagree, based on the number of times doctors have misdiagnosed me, and AI or other internet searches have yielded a correct diagnosis and treatment.
It won't compete with the top 5% of doctors, but most of the time you are not going to get to see a top-5% doctor.
Having a doctor does not guarantee good judgement or good experience. But an LLM is guaranteed to have neither judgement nor experience.
Get a second opinion, or a third. Don’t get zero opinions.
And most of the time, you don’t need a 5% doctor, you need to find the one with the correct background of experience. Every misdiagnosis I’ve ever had was because I was at the wrong specialist. If you don’t think you’re getting the right care, sure, ask your LLM for alternatives. Then go speak to specialists in those fields.
I don’t see any other options: by definition non-specialists can’t give specialist advice. Specialists aren’t obliged to give free advice, don’t know your situation, and won’t want to prove their qualifications to comment on Reddit. Restricting free speech so nobody can talk outside their knowledge is rife with problems.
The folks who actually go work in the field, understand the structural problems, the costs/benefits, and the long slog to bring successful treatments to patients are skeptical. But we're still more than happy to be proved wrong- if Anthropic (more than OpenAI) is working on life sciences and drops some amazing information that transforms cancer care with massive positive results, we all win.
Do we all? Or does anyone with enough money to pay for Anthropic's IP, win? Nothing states that Anthropic/OpenAI/... have to share information they have generated. As the crunch for income becomes real, I doubt valuable things will remain free.
If they succeeded, you can bet everybody else will be duplicating their results within 2-3 years.
Very few diseases are caused by individual mutations like that (typically only monogenic Mendelian). Individual mutations typically cause an increased propensity, or severity, rather than being the sole or root cause of a disease.
You're talking about polygenic traits. That's a different ball game entirely.
In short, if you solve a monogenic disease you help maybe 20-30 million worldwide (and then you have to solve other ones), if you solve CVD,type 2 diabets, hypertension- each of those is 500+M people. So in general, we would expect to have more impact with polygenic, although they tend to be far harder to treat because of the complexity.
- You should pressure test anything an AI says with your doctors, and anything a doctor says with AI.
But you definitely want to scour the entire search space for solutions.
And the most efficient means for that is LLMs.
It's my experience that doctors are compartmentalized in their thinking, limited in their time, and definitely will not be extensively exploring your case.
E.g., I had 30 years of resistant hypertension. Multiple medications. Saw many cardiologists. Nephrologists. I was told to "just lose weight." BP was erratic over the years. ER visits. It was awful.
I googled. Pheochromocytoma. Hyperaldosteronism. Asked the cardiologist, "Could it be this?"
"NAAAAH, just lose weight."
But I insisted on a referral to an endocrinologist. And when I suggested it to them, given my extensive history, they were basically like, "Oh yes, we'll get you tested. I'm surprised you haven't been tested before?"
I had a left adrenalectomy 6 months later. BP has been controlled ever since.
They don't know everything. They can't.
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.
Doc: "Do you have any other medical conditions besides your {red eye,stomach ache,itchy foot}?"
Patient: "No."
Doc: "Are you taking any meds?"
Patient: "Yes I am currently on chemotherapy for my cancer."
Doc: "Okay... so you have cancer?"
Patient: "Yes I have lung cancer."
They do. In my experience they're usually pleasantly surprised when you have dates and timelines rather than "oh I don't know, about a year ago?"
That being said the reaction differs if you offer a self diagnosis (assisted by google or chatgpt) rather than just symptoms. There will not be pleasantness. It's a toss up between a dismissive "yeah maybe" and "uh uh, did google tell you this?" Many doctors will 100% listen and consider what you say, but in my long life I've learned that offering a self diagnosis must be done very tactfully.
On one hand it's understandable, us as programmers don't enjoy having a nocoder arrive with "yeah so chatgpt says this is no good" and having to explain to them why they're wrong. On the other hand modern patients do their own research before consulting, so it's worth at least considering what's being said.
It does not always work, but a lot of doctors in my experience take some time to kindly explain why they think the other possibilities I'm concerned about are unlikely, and sometimes my questions actually prompt them to add some additional investigations.
One bad side effect of coming in with your own self-diagnosis is sometimes they will index on that and stop considering other possibilities they would have suggested if you hadn't primed them with a diagnosis.
I did resort to "self-diagnosis" once, though: for R-CPD (no-burp syndrome). Most doctors simply don't know this condition exists. I brought it up with my GP (whose referral I needed to see a specialist in Ontario), prepared for some pushback, but was pleasantly surprised that he did some brief research and then helped me forward.
Then again, I may have been lucky. I still hear stories of doctors who are less than cooperative when patients bring them "self-diagnoses", even for something as open-and-shut as R-CPD. But if most of those "diagnoses" are BS, then I can empathize with the docs, too.
You can do whatevvr you want with the audio files - have them transcribe them, summarize them, hand them to an agent, upload them to your cloud, whatever.
The standby and talk time is really great on both the pins and the credit card sized versions.
I have a lot of friends that now use them with elderly parents/their own medical care when they need to really be able to have something automatically record/transcribe the visits.
1. If you want something totally open source: https://github.com/RemiPelloux/OpenPlod
Local-first Plaud Note Pro recording vault, transcription, and Markdown workspace. Which sounds like what you want.
2. the Plaud SDK will let you pull from the device and send it wherever you want without touching their servers.
3. You can also use the mobile app, disable cloud sync, and export each audio file as mp3/wav to your phone/tablet/whatever if you don't want to use #1 or #2.
You can have it upload to your private cloud without doing any of these, but it still transits their servers first i believe, which it sounds like you are trying to avoid
In the USA, providers are openly hostile to being recorded. You had better ask at the front desk if you can record anything first. They will tell you no.
If you covertly record, then they have every right to refuse you service and eject you from the exam room.
Do not ever record anything independently with your provider. They are absolutely hostile to this and there is no getting around it.
They will tell you that it is a violation of HIPAA. It is actually a violation of CYA.
Providers do not appreciate having any independent record of one-on-ones that they cannot repudiate themselves. If they didn't document it, it didn't happen. Don't record providers.
This is done all the time, and is quite common, particularly when care is shared between multiple people or people are elderly
16% of all appointments are recorded by patients, and the number is increasing all the time. It's up like 20-30% year over year. Only 3% of those recorded are done covertly.
Basically all medical associations have issued guidance on this and the guidance is not "kick people out of the office"
I have never once had a provider become hostile or care. Nor has anyone I know. People record with phones, dial people in, etc.
This is across like 10+ states, tons of conditions, ages, and hundreds of people.
While you may have had a different experience, i dont' think i would go with "don't ever do this". It's happening in almost 1 in 5 appointments, and increasing all the time.
I have interacted over the phone with two major clinic systems who have busied out my line and hung up on me, just because I activated Call Recording on my Pixel.
You try it. Telephone your clinic/hospital and activate Call Recording, and see if they will still even stay on the line with you. Notify the human who answers, and see what happens.
This was not merely a human decision; it was the clinics' automated system countermeasures vs. recording a simple, normal phone call.
I was also reprimanded for recording at my psychiatrist's clinic. Then they posted signs that said that all recording, photos and videos are strictly prohibited.
When I asked at an independent Urgent Care facility, the front desk flatly refused. She insisted it was a HIPAA violation. It is not.
They also do that if you show them pictures of your poop when you have a bowel thing going on.
And I pull records from my chart etc using the data export periodically and use an importer.
If I’m being honest, it’s more that it scratches my itch to document than that it is useful.
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.
Looking at financial reports of the major health insurance stocks in the US makes me wonder if they are really "incompetence".
Take United HealthCare (UNH) for example, they reported $112.7 billion and net income of $4.11 billion in Q3/2026. That's great amount of revenue and profits to have enough resources to not stay "incompetence". It's not a coincidence.
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.
The advantage of the less developed countries is that you can get pretty good private medical care for a reasonably price. The quality may not match the very best care available in the rich countries, but in many cases, it is adequate.
What is a "reasonable price"? Relative to a rich country, the price may be low. But relative to the average income to common folks in that country it is likely just as expensive as a comparable private option is in a rich country. Apples vs. oranges.
Iow, you are describing the perspective of a rich person in a poor country. I don't think a rich person in the U.S. (top 0.1 percentile, let's say) minds the health case costs in the U.S. either.
Of course the top tier private hospital and specialists can be pretty expensive, but is not that expensive to avoid the public/government health system.
I often try to go cash pay, since in many cases at this point it's actually cheaper, absurdly enough, and get told that I can't even get an appointment that way. I actually got kicked off primary care at a regional (fairly large) practice because they couldn't take my insurance, would not bill out of network, didn't service uninsured people (!!), and would not take cash, credit, barter or trade.
More common specialists you can just book with. I got an appointment with a cardiologist with no fuss.
> Doctors are used to nuts who googled the symptoms
When you were there, did you have anything else to come with than the symptoms of your family member? In other words, how did you look different to the doctor than somebody who just googled their symptoms? (Or, to put it differently, without meaning disrespect, in which way were actually different from cases you referred to in the above quote?)
And then I sat in the nurses station until the doctor finally took time to listen. They threatened to get security, but I just kept my head and kept pointing at the things the doctor himself wrote.
I didn't try to interpret anything, I didn't do any diagnosing myself and I didn't try to act like he didn't know what he was doing. I just kept saying that it was more serious and we needed a second opinion.
Does that help?
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.
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.
If you saw a concierge specialist that is cash pay only they'd probably see you no matter what though.
Don’t forget, Doctors are just well read mechanics
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.
And people like this are typically not that difficult to get in contact with via email.
Hell, I’ve successfully used LinkedIn to get an appointment when calling the main office didn’t work.
Get creative and trust no one.
One thing I noticed is that the oncologists managed my brother far more than they actually worked on his case; oncologists are often overworked and, by necessity, desensitized. They are aware of new treatments because the pharma industry takes good care of that, but they are way less willing to read scientific literature relevant to a specific type of “rare cancer” present in a “single patient”, and they actually need the two things to be effective.
I feel for you and for your family; may the stars align for you and you get to be out of your crucible with the least amount of suffering.
I'm lucky, in a way that the stage was low (stage 2, T1N1, low-risk/low-EBV). My entire treatment (chemo-radiation) was done in ~3 months, and my team of doctor knew well what they were doing. The side-effects of the treatment last for years unfortunately, something I have to deal with.
It's been 3 years on remission, no sign of cancer/marker anywhere. I'm grateful.
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.
By all accounts is amazing to her patients, but god the amount of work thrown at a PCP and the deluge of emails and just how little life the system gives you (at least while in residency, I guess I'll see what happens after)... like I have to imagine our care could be so much better if we weren't trying to optimize the system and had more resources.
My mom is a teacher and it's similar there, she loves kids so much and after a few decades she absolutely cannot wait to be done. She was excellent at the start of her career and got kudos from absolutely everyone but now she's just getting by until retirement because she can't take it anymore.
Not a doctor, and not a case worker, but someone with a deep knowledge of the American health care system and infinite patience. A trusted person to take you to and from appointments, to chat with you about how things are going, and handle paperwork.
It would be expensive, but I think it would pencil out for most working professionals who don't have the time or energy to navigate everything for themselves or for a loved one.
"""There was not enough of the patient to go around, and specialists pushed forward in line with raw tempers and snapped at their colleagues in front to hurry up and give somebody else a chance. A colonel with a large forehead and horn-rimmed glasses soon arrived at a diagnosis. “It’s meningitis,” he called out emphatically, waving the others back. “Although Lord knows there’s not the slightest reason for thinking so.” “Then why pick meningitis?” inquired a major with a suave chuckle. “Why not, let’s say, acute nephritis?” “Because I’m a meningitis man, that’s why, and not an acute- nephritis man,” retorted the colonel. “And I’m not going to give him up to any of you kidney birds without a struggle. I was here first.”""" - Catch 22, by Joseph Heller.
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.
It took me decades (and a ton of advice from my wife) to understand how medical systems work and to get the results I want. Having a good relationship with your PCP is invaluable.
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 specific term is called "NCI Designated Cancer Center". If you can go there, do it.
Just take the mindset of - if this gets screwed up, where do i get sent to deal with the screw up, and just go there first.
the crazy thing is, as mentioned above, they probably take your insurance and your not going to end up paying more to be at a top notch facility.
Once you're at that point, just go to the top of the list for whatever specialty and fly out of state, or even to a different country. US healthcare is so absurdly expensive that flights and hotels kinda have to be cheaper than the care no matter how crazy you go.
I agree with you in spirit but once you know you diagnosis most cancer treatment isnt actually that complicated because we dont actually know how to treat 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.
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.
I don't recall the specifics, but there were symptoms of an ENT infection, nothing serious. I remember being concerned about a white lump on one of my tonsils. The doctor's diagnosis? A stuck piece of rice.
No, it was not a piece of rice. It was a tonsil stone. It happens almost every time I get sick. And I guarantee that if I shared my symptoms and a photo with AI, it would render the same conclusion.
Would it be dumb to blindly trust everything a model says? Sure. Should you trust it alone, especially for major issues? No. But having received such a stupid and brain-dead diagnosis from a supposed "professional" doctor in the past, I would never give them the automatic benefit of the doubt.
Current frontier LLMs are incredibly powerful diagnosticians. They will generally give you the best assessment that can be made on the basis of the information you include in the prompt. So it's important to make sure that information is accurate, and also that it's phrased well enough to allow the model to weigh the importance of each detail.
Unsurprisingly, the same tips are important when communicating with your actual doctors.
This is literally life-and-death. My recommendation is for full transparency, it was crucial for us.
You should really try to have a copy of your own records. Different sorts of clinics may sometimes make it difficult to get a copy of studies, reports, etc. but it's something you should really insist in, to the point of avoiding places that don't give them to you. It lets you have greater selectivity of your healthcare providers by not depending on a provider for access to your own medical data. Resist the lock-in.
Also, providers may not archive your data forever. I've had one that realized my records from a visit some years earlier had been discarded/lost. They would have been really useful to make a comparison.
Having your records yourself, you won't have the need to tell them so they can ask for your records to the other provider on your behalf.
It's a good idea to tell them you came to them for a second opinion after they've already given it, so they can also give their opinion on the first opinion. However, that's different from telling them so they can get your records when you should already have them yourself.
His staff was gruff, there was such limited information as we progressed through the system, there were so many patients there from all over the western part of the US. For many of them it was their first time with cancer, and sitting there in the waiting room with my (non-medical!!!) bio training my Dad would often offer my services to "explain" something. Which I did, and I think I helped, but it was all rough.
The main doctor was so gruff and obnoxious that I emailed my MD friends in Boston (was still in grad school) asking how I could file a complaint.
But at the end of the day that process helped my father (and many of those other people ) get state-of-the-art proton beam therapy, covered by insurance.
Sadly my dad's cancer came back a short time later and he passed away (miss you too Dad).
But now, 15 years later, having been through the healthcare system in so many ways, and having many friends who are academic specialist MDs, I recognize that the doctor in SF was operating with incredible constraints, finite resources, and probably tired. And my Dad got the best possible treatment technology as a result of the second opinion.
But at the time I wanted to strangle the doctor.
I'm writing this just to say that sometimes the second opinion is tough. Sometimes it's in a far-away place or the doctors are jerks. Maybe even borderline unprofessional. They're the bastard operator from hell in their own little world. But again, this is life-and-death.
GET THAT SECOND OPINION EVEN IF THE DOCTOR IS A DICK.
(fuck cancer)
And everybody thinks that with perfect medical treatment, they'd be healed, when in reality that isn't the case. Some conditions are simply terminal and the best treatment in the world isn't going to change that. And you even have the equal but opposite happen on occasion. For instance cancer sometimes spontaneously goes into remission even without any treatment, which is going to lead to a rather great outcome regardless of how inappropriate (or nonexistent) the care may have been. Had this happened to Steve Jobs, we could've seen a catastrophic social cascade begin.
Doctors are going to see those odds and outcomes play out, day in, day out.
And as a patient, if I'm doing something stupid, say I'm an idiot. But just diagnose and treat my illness quickly and efficiently no matter how common or rare.
tldr: I like 'House' type doctors over the opposite.
I found surgeons to be like SWEs personality wise, so there's that.
They were complete no-ops and a waste of time. Faced with that same situation today I would simply lie about whether or not a treatment plan was put into place.
Second bit of advice is to try as best you can to go into clinical trials with an understanding of the landscape of disqualifying treatments. Any immunotherapy treatment, for example, will disqualify you from nearly all subsequent clinical trials for immunotherapy.
Lastly the thing I would recommend for partners of loved ones in the crucible, don't get too distracted by trying to 'save the patient' that you miss opportunities stay connected with them in the process. It's not your responsibility to save their life, as much as it might feel that way when you're in the thick of it.
I fully encourage any patient who wants another opinion to get one. Definitely really good advice to seek one out before you start on your treatment plan, if it can be done without undue delay. I think of planning cancer treatment like lining up to take off for a flight: some plans even if imperfect are more dangerous to alter than continue if they've already been put in motion. There are--rarely, thankfully--times where we don't end up concurring at all in the diagnosis or treatment, and this is all best sorted out before the first treatment.
But a second opinion isn't a waste just because it agrees with the initial plan. In my experience, that's actually the most common outcome, and I think it's a really good thing if a second opinion can give deserved reassurance that your original team is doing everything by the book. For many common cancers, there's consensus as to the most appropriate first-line treatment because there's peer-reviewed evidence and agreement on how to apply that evidence. When all of it points towards an effective treatment, down to a standardized dose and schedule, and it's a really good thing!
There's some subtlety that arises when there isn't a clear consensus as to which of (say) two reasonable approaches used by different comprehensive cancer centers is best. If you look at guidelines, both of those approaches would be listed as appropriate, but patients might be recommended one plan at center A and a different one at center B.
What it can come down to is that center A delivering treatment A demonstrates comparable results to center B delivering treatment B. In that scenario, if a patient lives down the street from center A and travels hundreds of miles to see me for a second opinion at center B, I would almost always agree with getting treatment A at center A. Not because I'm trying to manage what center A would think of me, but because I'd truly believe it's in that specific patient's best interest. First, all else being equal, I'd have no grounds to think that traveling hundreds of miles to get treatment B at center B would be better than staying local. Second, in general, I'd strongly doubt that getting treatment B at center A (which wouldn't be the plan they'd have the most experience with) would be superior to getting treatment A at center A.
And, yes, I absolutely have recommended when appropriate for patients to transfer care to our center, and I have also recommended when appropriate for patients to leave our center to go elsewhere (for example, for a particularly promising clinical trial option). I've seen every one of my colleagues do the same without hesitation.
This is all just from one person's perspective, of course. I know patients and families can come from different and totally valid vantage points. But to sum it up, please don't worry about managing your doctors' emotions about getting a second opinion, and find a place where you can be confident that the folks giving you their second opinion likewise aren't thinking about managing your doctors' emotions. Hopefully, they'll earn your trust that a concurring opinion means they really do think your original team has laid out the plan that's best for you.
When it comes to what the OP was talking about... those of us who are conflict-averse and can't get ourselves to make dozens of unanswered phone calls, are we just shit out of luck if we get into that situation? As much as I hate it now if it involves disputing a mistaken Amazon purchase, I imagine I would just give up if I were already suffering. Is handling bureaucratic gatekeeping the only way to get care, outside a top tier cancer center, in your opinion? My dad's got some money, he's got private insurance. I want to say that if I were him I would have hired an advocate of some sort, to process all of this. I don't even know if a thing like that exists.
Memorial Sloan Kettering is widely considered one of the best treatment centers for gynecological cancers, and they were completely useless for us. The Dr. spent about 15 minutes talking to us and reviewing the case, gave no advice, said nothing in favor of or against the current plan and just said to reach back out after the current treatment plan played out.
This was six years ago and I still can’t think about it much without raising my blood pressure.
Anyway, patient advocate and phone calls/office visits are about the only tools you have. It can be a full time job keeping things on track.
The doctors each saw one small part of the case, he was being passed between multiple doctors and NPs. There was no coherence. At one point he ended up on so many medications that made no sense he passed out. Only at the hospital when a doctor looked at everything together did they realize what a mess had been created and got him back on his feet.
I ended up giving all of his records to an agent and making it the coordinator. It found a bunch of problems. He was being given the wrong pain medication on the wrong schedule, the moment that was fixed he felt a lot better (unfortunately he lost so much weight on the wrong schedule it's what got him in the end). They also use voice transcription software, which led to a key error about what genetic markers he had. Fixing this changed his treatment plan!
In general, I wish we had been much more aggressive with this. Last time we had a major medical issue an NP almost killed my wife. At the time there was no AI, so we just had to recognize things were in decline and start being aggressive about getting in with the right doctors (the moment we found the right one she was diagnosed, had surgery and was cured in weeks).
He started doing better when the AI became the central coordinator and doctors/tests/etc. became their inputs. It was an excellent advocate. And while we have science backgrounds, we aren't doctors. But it could present evidence for actions in ways that the doctors appreciated (his oncologist was impressed and called the AI a member of the team).
Unfortunately his physical reserves were very drained at that point. He probably would have had another 6-12 months with his family if it wasn't for the disorganized mess of a care system that we have.
A trusted family member is always a huge help at appointments: even if it’s infeasible to go in person, ask to listen in remotely. I’ve been in those shoes too.
Be overcommunicative, be the squeaky wheel: for our part, we know the difference between even zealous advocacy (great!) from disruptive behavior (not so great!).
Sorry, the system can suck. I promise you that every oncologist has had to make those unanswered calls too, so we do know something of this end of things. But you and your loved ones don’t deserve to suffer for it, so don’t be shy.
As an engineer, embedding such a check step (basically a PR review for your body!) in the standard workflow feels very natural. But in the medical context, getting a second opinion usually needs extra effort by the patient and often involves awkwardness.
It feels involving too much friction given the high stakes. What is your opinion on this?
There is a standard practice at cancer centers which would be more the equivalent of PR review. Often it’s called “tumor board” but names vary (ours is called “case conference”). Depending on the institution and department, all, most (anything but the most straightforward), or some (unusual, advanced, prompted by patient discussion, etc.) cases are brought up for a consensus opinion. Like PR review, the format and formality of this process will differ institutionally, but some version of it is standard as part of the “workflow.”
If the specific department reviews all or most cases as a matter of course, it may not even be mentioned to patients (let alone requiring them to ask for it) unless the consensus opinion alters the original plan. Pathology or radiology consensus interpretations if they occur usually precede the issuance of a final report (so as to avoid giving one interpretation that’s potentially acted on but then amended) and are notated with specific verbiage.
A second opinion generally means transferring records and tissue samples outside the original institution. Think of it more like assigning the same bug report to two teams. There is a role for this, but I wouldn’t think of it as PR review.
Most studies that which reach stage 3 will not be approved, and that's because they're found to to be unhelpful or even harmful. So the most likely scenario is you do nothing or even hurt yourself by seeking out clinical studies, all of which will be optimistically framed as promising and potentially revolutionary. This can be particularly dangerous if you're opting into a trial in lieu of the standard treatment, as opposed to in addition to such.
I would just say that ‘dangerous’ is relative and when the standard of care leaves effectively no hope, your tolerance for risk can change. Yes this does increase that chance of shortsighted decisions or manipulation. That just comes with the territory, I’m still very appreciative that we have the option to elect to participate in the peocess.
As GP noted, most drugs don't work. To make it a bit more specific, even in phase 3, the failure rate for cancer drugs is something like 50%. And that's typically for some non-survival endpoint (assuming you even get the treatment, which is itself a coin flip).
Clinical trials are noble, admirable things to do, but too many people think of them as treatments, when they really are not. They're an experiment that you do with your body when you reach the end of the road and there are no more options.
It always makes me a little sad to hear how patients talk about trials and fight to get into them, as if being in the trial is somehow progress. Expectations are not being managed properly.
And? What is the point of this observation? Of course they are unlikely to do anything. Your other option is to do nothing and die. Nothing wrong with that if that's what people choose to do...'accept their fate' and all that. I'm not opposed to it at all, there's a certain appeal to it.
But when your wife and the mother of your two beautiful daughters is laying helpless on nature's altar you fucking move dude. You don't do nothing.
> Your other option is to do nothing and die
I really don’t want to be this blunt, but I don’t know how to say it any other way: death is not an option. When you’re at the stage of clinical trials for cancer therapies, it is the inevitable outcome. Otherwise, you wouldn’t be in the trial. Maybe it extends the inevitable, maybe it doesn’t. The odds lean heavily toward the latter. And there’s also always a cost.
I’ve lost friends and family to cancer too, and watching people you love torture themselves with ineffective (or even minimally effective) treatments is agonizing.
When it comes to clinical trials, you need to start with the cold, hard reality that you’re doing an altruistic experiment with the remaining portion of your life. There are lot of people who don’t understand that, and see trials as some kind of back-door to better treatment.
The probability that I think you're talking about here is not actually relevant, given that the trial is already underway. Basically, the "potential advance" event has already happened. (Similarly, the probability of getting shot by an arrow is not relevant once the arrow's already poking out of your body.)
Given the trial is already underway, the probability that matters is the fraction of treatment candidates at the phase you are considering that make it all the way through; for phase 3 trials, this is 58-65% [0], which is actually pretty good. Of course, rates for earlier phases are much worse because there's attrition at each phase.
0: https://patentpc.com/blog/clinical-trial-success-rates-how-m...
[1] - https://academic.oup.com/biostatistics/article/20/2/273/4817...
Prompt engineering!
Sadly, you learn that honesty is not the best choice always. And an honest answer is best given without too many priors.
While using this information for comparing clinical trials is fine, I want to emphasize that it would be phenomenally short-sighted to skip first-line approved immunotherapy in order to preserve the option for some random trial later on.
I'm not sure if you're actually suggesting this, but immunotherapies are some of the best cancer therapeutics that exist, so skipping approved drugs for future experiments is just a bad idea.
In our case it was a clinical trial that the oncologist was aware of and we got in. I'd obviously heard of clinical trials but that was my introduction to the machinery by which they operate.
Of course, I know nothing is ever certain here. Still, having two opinions or more data can be valuable, but only when whoever makes the final decision can actually use that information: detecting any bias and deciding with a good balance between risks and rewards.
I don’t regret it.
So, unless the first two opinions are completely identical - yeah, definitely get the third. Better to go for people with slightly different specializations if relevant.
In the first case, I decided to talk to an expert in the particular area who then ordered different tests. These indicated the issue had actually gone away completely, and I avoided surgery as a result of those.
In the other, a grade 2 ACL tear, it was less clear-cut, but I felt like the explanations given by the second doctor as to why he'd recommend against surgery were clearer and made more sense to me.
I'm glad I got both second opinions and the first case in particular, made me much more likely to get second opinions in future as well as more confident about doing so.
My late wife was treated for metastatic melanoma at MSK. Their approach is to have clinical teams and a tumor board that are assigned patients with related cancers. They are seeing many patients and there’s a warm hand off between specialists. Your radiation oncologist, medical oncologist and surgery / neuro specialists are on a team and know each other and are often familiar with the cases. In my wife’s case the community oncologist was wonderful, but he was a sole practitioner for this particular cancer.
In the second opinion scenario, they get to use that experience and caseload to look at a case with some perspective. Your community oncologist likely works on a small team and may not have the luxury of time and exposure to trials, etc.
Think of it as a second set of eyes.
Of course, if additional tests are done by the second doctor and new information is uncovered, that helps.
My ex-wife was diagnosed with thyroid cancer, and the first doctor said that urgent surgery was needed and both thyroids need to be removed.
She obtained a second opinion from a well-known oncologist, who said that only part of one thyroid needs to be removed, and it wasn't so urgent.
Because everyone wanted to believe the second doctor, that was the option she went for.
This was a very expensive doctor. Shortly after the surgery, he notified her that, in fact, the cancer had spread to both thyroids, and the other one had to urgently be removed as well. This led to double the medical bill, opening up her neck twice, and all the accompanying inconvenience of two surgeries.
It was a strange situation where an incorrect assessment by the doctor directly led to that doctor making more money.
Also, it highlights the tough decision in terms of how you decide between two conflicting opinions if there are no additional diagnostic results to assist.
There are generally clear discriminators determining whether a lobectomy or total thyroidectomy is called for. What is missing here is the detailed discussion with the two doctors of exactly why they were recommending their course of action and what attempts were made to reach consensus. "everyone wanted to believe" is not the way to go about such things ... but there's a good chance that the evidence favored the less radical course. A lobectomy has considerably less radical consequences and so is strongly preferred if a total thyroidectomy isn't indicated. But it's not uncommon for the pathology report of the removed lobe to indicate high-risk features that call for a "completion thyroidectomy", which is what your ex-wife had. It's not some nefarious conspiracy to make more money.
With "everyone wanted to believe" I was referring to the patient and family.
It was (is) difficult to get appointments with these doctors as they are fully booked months in advance and there was no opportunity to consult with them again or get them to discuss the case with one another. Hence the decision had to be made with the information that could be remembered from the consultations. (These days I always record all doctor's consultations for future referral, as memory / recall is of course notoriously bad.)
Particularly with cancer, when earlier treatment is better.
If doctors improve (maybe by using better analysis tools), hopefully it will no longer be necessary.
And she's wealthy.
Having done so, from both the asking and being asked, yes I was offended. And glad I was asked after actually doing it. And learned to be insistent in asking. We all have hesitation but we should realize that “expertise” is a relative illusion and peer review is the only standard of progress we have ever demonstrated to be (eventually) fool proof. There are no people I trust in any field to be right for the sake of their name or accomplishments. Society needs that feeling to be stymied and eventually eliminated.
Treatment for cancers such as lymphoma unavoidably result in the immune system being basically destroyed... so patients are, at times, unbelievably vulnerable. My brother ended up in A&E several times. Sometimes it was a false alarm - just nasty but normal side-effects from the treatment. But, several times, he had caught an infection that required IV antibiotics to resolve. He ended up on PipTaz several times and Vancomycin at least once.
You would think an immunocompromised cancer patient would go to the front of the line. But this was absolutely not his experience. Even though his wife repeatedly told anybody who would listen about his situation, he was nevertheless subject to huge delays in diagnosis on multiple occasions.
And - this is the point of my post - delay in treatment for an infection on one occasion resulted in sepsis that was only diagnosed when his wife eventually persuaded a doctor from the cancer ward to come down and look at him herself.
Absent his wife's borderline aggressive/hysterical advocacy for him he would be dead.
My takeaway was that the 'best' situation, therefore, is one where your cancer hospital is a genuine specialist centre AND your local emergency department is highly rated and sees a lot of cancer patients and so knows what to look for. If the latter is not the case, you will need an extremely effective and tenacious advocate to fight on your behalf.
Sadly some will be. But they are to be avoided anyway.
A friend of mine was diagnosed with leukaemia, and the doctor literally told her - get your affairs in order, you got 6months to live, tops.
She spend a day in a daze not knowing what to do, and her parents were like - get a second opinion.
That one turned out negative. The original doctor was like - ah sorry, my bad.
Results come back: Just some blood under the skin.
I've had a lisfranc injury, which while not life threatening is very serious and the quicker the surgery is done, the better outcomes.
My podiatrist did X-Rays incorrectly, I told her I'm seeking 2nd opinion just to confirm her findings. I've found a guy that specializes in lisfranc at Rush. He performed correct weight bearing x-rays. It was a bad sprain and not a torn ligament. It took 12 months to completely heal but I was walking mostly normally after 4 months.
Always SEEK 2nd and 3rd opinion if it is something serious. You can also "find" algorithms use for diagnosing and treating suspected condition to make sure your physician is up to speed.
Not all physicians are equal. They also deal with burn out, and have better and worse days.
As a Asian, this is really fascinating to me. We, in general, are conditioned exactly the opposite. We don't trust our doctors, govt or anyone other than our immediate family. Taking a second opinion is just normal. As someone who now lives in the "west", and is now taking a second opinion for a condition, my doctor here was almost offended when I asked for a copy of my results in order to take a second opinion.
Sadly, most Western countries are hellbent on degenerating to low trust societies.
Which confirms my point.
> which is seen as a good
It absolutely is not. As a patient, I shouldn't have to bear the mental load and financial expenses of having to get second or third opinions because apparently, doctors can't do that on their own or make sure they stay on top of academic research. And certainly not with a confirmed diagnosis of cancer.
This is possibly bigger than second opinions if it's an option for you. Part of it is just volume, the big national cancer hospitals see so many cases that they have super specialized departments & doctors to deal with much more niche areas of expertise.
Your local hospital might have "the skin cancer doctor" but MSK has ~20 sub categories of skin cancer with different doctors specializing in each. And so on for each area/type.
A relative of mine had a rare form of (very treatable) childhood cancer in the NYC metro area. It was diagnosed eventually by the local oncologist in the local hospital. His parents were ready to use the local hospital/doctors until the conversation turned to "and how many of these have you treated before and how did it go?". Sheepishly the doctor said "once and uhmmm, well.. it went ok".
So they sent the files (back in the physical paper files via mail era) to MSK and saw a super specialized treatment team that dealt with this regularly, successfully.
Anyhow, a few years back he found out while being evaluated for a lung transplant at Duke he had stage 2 lung cancer (I don't recall the type). They had actually missed it six months prior on an earlier scan. Thereby dashing his hopes for a transplant. Long story short my brother convinced him to head to UPENN for a second opinon. Where they were at the time, one of a handfull of places in the country that did proton radiation. His SC team convinced him to do one round of chemo as he couldn't get into PENN for another 5 months. He has been cancer free for a few years now. And they credit the Proton radiation.
I wonder if it's a cultural thing. I live in Poland, here we ask for second, third and sometimes more opinions in cases far more trivial then cancer. We do this before any kind of surgical procedure, painful treatment, anything that could be even unpleasant. I saved myself from a couple of root canal treatments just by consulting different dentists. We don't trust doctors at all.
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.
Oh the privilege.
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.
- 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.
1) Very old injuries, almost all when I was a child or teen playing sports or doing reckless things, which caused neuralgia (nerve pain). Two were on the head (one from skiing, one from playing baseball and getting hit with a bat on the head by accident). Another on the tailbone that am focusing on now
2) Very bad posture related to these injuries - had horrible posture as a teen, and thinking back, this is very probably due to my tailbone pain. It caused a ton of pain when sitting and also caused me to twist up my pelvis and hips to avoid it. This terrible twisting on top of the other pain destroyed my posture and clenched up my neck, and for the past 30 years, have been trying to undo those postural problems and muscle clenching. Have done a lot of physical therapy and exercises, but it's much better now (although, it's still a work in progress and will probably never be finished).
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.
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.
This really rings true with me after my experience having pancreatitis earlier this year. I ended up hospitalized THREE times in the span of a month. The initial hospitalization was for the pancreatitis (which became necrotizing pancreatitis, this is important). Then I was discharged after the pancreatitis pain subsided - I think at that point they had noticed that a psuedocyst had formed next to my pancreas but they didn't see it as an issue and wanted me to get it looked at outpatient.
A week later, back in the hospital, jaundiced face and eyes because it turns out the psuedocyst that 'wasn't a big issue' was compressing my bile duct, which were causing multiple issues. They did some tests, my liver enzyme tests went back to normal (briefly), they discharged me again.
Another week later and my liver enzyme tests had skyrocketed again, and I was instructed to go back to the ER again. This time we didn't take 'oh you'll be fine, deal with it outpatient' as an answer and insisted that they look deeper into it after the 2 previous hospitalizations, and they ended up being able to 'scoop out' the stuff in the psuedocyst and finally have it go away and stop causing issues
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 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?
It's a very extreme form of individualism in combination with capitalism. Then we have the worship of corporations
The best way to operate under that is how you should expect everyone else to: strongly advocate for yourself, because even hospitals in cases like this will be looking after themselves first
It'll ruffle some feathers because it is a gross generalization that does not fit what most of us experience. Confirmation bias is really a thing.
I would be shocked if it did not go pretty much exactly the same in the US. Testicular cancer diagnosis is really well understood and straightforward.
The moral of my personal story in this context is probably somewhere near the intersection of "not all cancers are the same", "you can always find an anecdote which suggests something", and "luck is a factor in life".
If I were to go through it again I'd still probably get a second opinion and go to a better place even if it was a straightforward type though because why not if it's covered the same in the end.
A couple of reasons (off the top of my head). Depending on the type of cancer, there are certain genetic markers that indicate how it might progress + impact the overall risk. This is something you might want to communicate to other biological family members. Your genetics also can impact what treatments you respond the best to, and knowing ahead of time lets you start on the things that are most effective for your body in particular.
Note to everyone reading your comment:
This is a typical psychological response, a deep need to trust the given system you're in, especially when it comes to serious medical issues.
This will lead to suboptimal outcomes and/or severely harm you in most circumstances. The people in these systems are just people, they make mistakes, they have their own personal issues, they have their own interests. The people who designed these systems are just people as well, they make mistakes, the systems are flawed, the system itself has its own interests and logic.
You need to be your own advocate, do your own research, not take what people say or do as gospel.
And yes genetic testing is extremely valuable in modern cancer care, a good oncologist will do this immediately.
I think the first genes identified that had an influence on cancer prevalence were breast cancer genes BRCA1 & BRCA2. These genes also have an influence on men getting prostate cancer.
This article explains more:
https://www.cancer.gov/about-cancer/causes-prevention/geneti...
Lots of people surely have these genes but no breast cancer, and many or even most cases of breast cancer don't involve this genetic variant.
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.
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.
I assume so. My experience is pretty similar to yours.
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.
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.
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.
But there’s also the matter of medical practice without a license, and unregulated (no fda approval) medical devices.
Here's a synthetic conversation I simulated with Chatgpt
https://chatgpt.com/share/6ad142c6-40a8-83e8-b522-daafb2738b...
Chatgpt seems pretty comfortable triaging without any legal waivers or disclaimers about not being a doctor. That said it's possible it did so for OP, I don't know
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.
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.”
If we healthcare customers realized that our data is really the future of medicine, and we had a way to give each individual their own records (like some encrypted block chain or something) that they can hand out access to their healthcare professionals to (instead of the other way round), we could get a lot further in detection diagnosis and treatment
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.
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.
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 do not expect to be meaningfully employed with a group insurance plan ever again. Guess I'm hosed if it happens to me.
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.
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.
In this context, though, we're talking about measuring the actual cancer (including the tumor's mutations) to determine what therapies it is likely to be responsive to.
e.g. this: https://www.cancer.gov/about-cancer/treatment/types/biomarke... not this: https://www.cancer.gov/about-cancer/causes-prevention/geneti...
I'm just responding to:
"""Genetic tests for cancer are a different kind of genetic test. They test the tumor itself for mutations that are present only in the tumor, not in the rest of the body."""
Strictly speaking, BRCA is a genetic test for cancer (even if it's only a "risk factor"), and it's done on the regular genome, not on the cancer.
(None of this is important or really relevant)
> 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.
The quote further upthread lost the last bit, which is pretty clearly talking about tumor sequencing.
> Strictly speaking, BRCA is a genetic test for cancer (even if it's only a "risk factor"), and it's done on the regular genome, not on the cancer.
Yes... that's why I clarified that I believed we/the article were talking about tumor testing and not BRCA (which is mentioned in the second link I gave).
For the vast majority of cancer patients, generic testing means somatic testing for tumor markers.
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.
Not that the finger test is not used so much anymore because it’s very poor at detecting cancer for much of the prostate.
I went thru all this a year ago and the MRI was 95% certain I had cancer! Turns out the biopsy showed I didn’t have cancer but another benign condition that was a rare complication of a immunotherapy treatment for bladder cancer that I did have…which is a different story.
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?
My problem with Prenuvo is not the screening aspect; it’s that Prenuvo is poor value. For the cost you pay out of pocket, I can find you conventional imaging centers that will charge the same (or less!) for fully diagnostic images and a fully diagnostic report. And they will give you the images on disk (or a link to a portal) right there.
If you want to be screened and have the cash to pay for it, go right ahead! Knowledge (can be) power! With the caveat that imaging is step 1 and you may need further work up. Don’t go to the Theranos of imaging; go some place truly diagnostic.
Agree that Prenuvo are crazy expensive compared to Mirovita ( https://mirovita.com) and others who offer the exact same service for significantly less.
This Mirovita (https://mirovita.com) one looks decent. Anyone try it out yet?
I was referring to random small businesses like this guy. I have seen the images from his centers; they are excellent.
Mirovita is a similar price point.
See fights over: mammography, serum PSA, Lung cancer screening, colonoscopy, etc.
I wouldn’t say most frontline doctors are personally against screening, but they hate fighting with insurance companies over this stuff, and would rather not deal with it.
- 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.
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.
If Texas isn't for you, Memorial Sloan-Kettering Cancer Center in NYC is the next best bet AFAIK.
Anecdotal of course but left an extremely bad taste in my mouth.
A friend's insurance didn't have MD Anderson in network and he ended up at Memorial Hermann, the staff of which flips back and forth between there and MD Anderson like Bing and Google used to because they overlap physically in the Texas medical district. The difference in his words was that MD Anderson was on top of everything and managed the entire experience while he had to rely on his background as a small business owner to manage his treatment himself at Memorial Hermann.
AI slop.
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.
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.)
Obviously feel free not to reply if you don't want to share, I'm just curious, thanks
My first symptom I noticed was consistent blood on stool, still remember that day I first noticed it.
That was later followed by stomach cramps (obstruction) and night sweats (the stage 4 part).
Remember, cancer does not wait, get it checked if you notice anything out of the ordinary.
The fact that you’re commenting here tells me you have tremendous mental strength.
If I can add, for the benefit of other readers… One thing I learned is every case is different. Different cancer. Different body. Different support network. I’d suggest to anyone hit by this bus to never lose hope and keep an open mind about options (second opinions, calling in favours, moving, etc). Wishing you all the best.
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.
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.
Have you checked out any international Clinical Trials? You can search a lot of these here: https://clinicaltrials.gov/ getting the filters right can be tricky though. I’d ask AI for some help looking for the right permutations of names for things.
I’d book a call with FCCT as well. They have a list of private vendors that can potentially help with genetic sequencing and a few other things. They also mentioned a service to me that helps you search for potential clinical trials.
Get LLMs to hillclimb your wife's treatment. The target isn't exactly verifiable but you could iterate on ways to add verification signals. There's a huge difference between asking an LLM: "hey claude, my wife has cancer, I want your help with x,y,z", which mode collapses it into extreme over-caution; versus setting up the problem like an eval, which sends LLMs into a frenzy trying to solve it no matter what.
Second thing I can share is the man who created an mRNA vaccine for his dog Rosie's cancer, and it worked! https://news.unsw.edu.au/en/meet-the-man-who-designed-a-canc...
The OP is understandably desperate for something that can save his wife. I would be too!
However, they appear to be seeking something akin to a miracle via chatting to LLMs, and the likelihood of such an approach yielding anything useful is very, very low.
Not having any luck but once she falls asleep at night and I cannot, I have to do something and I have tokens begging to be used ;)
The dog cancer thing got me excited and there may still be things to explore there but I get two conflicting opinions down that path - it is too late, since she is full obstruction there is no coming back from this spiral; and it is too early since there are still drugs that have a small chance of slowing or pulling things back some.
Update: thank you for the downvote, whoever you are.
But there's nothing to suggest eliminating meat can help combat cancer or increase survival rates. And good nutrition -- including and especially protein -- is critical while fighting cancer. Switching to a plant based diet usually makes this harder for people.
Don't throw around stuff like this. It's pseudoscientific, at best.
> thank you for the downvote, whoever you are.
You're welcome.
Watch the free documentary and you’ll see.
That’s a tough one.
I've made plenty of lifestyle changes over the years based on actual research, the most recent of which was cutting down saturated fat which cut my LDL cholesterol by over 50% in 6 weeks. But I don't put much stock in these documentaries that are incredibly biased. Only stupid people can't see just how biased they really are. They are created just to ride the plant-based diet trend to make money, don't you see that?
Also it's funny because you know nothing about my lifestyle but you are attacking it just because I don't follow a strict plant-based diet. You are in a cult and you don't even realize it
Eating clean proper ruminant meat will not be bad for you. What you eat with it is another issue..
Oh dear, someone gets their health advice from streamers and podcasters rather than actual health professionals.
The seed oil thing is nonsense.
> Eating clean proper ruminant meat will not be bad for you
Eating too much beef is bad for you in a variety of ways, it's associated with high blood pressure and high cholesterol, cardiovascular disease and type 2 diabetes.
It's frickin' delicious, but it's not some panacea superfood, quite the opposite.
For one, every way I eat is based on trial and error. I've read many books and studies throughout the years. I have tried a whole food vegan approach for 6 months in 2020, which was terrible for my IBS. I struggled with ibs for years until I started figuring out stuff. I come from a family that is chronic in their seed oils use, and other processed food. When I tried to cut it out from my diet completely, I had improvements in my gut, as well as my skin and migraine. I am diagnosed with idiopathic urticaria, migraine, and IBS.
Solving my issues has been my main goal since I was a 115kg heavy teenager under 165cm. I managed to lose all the extra weight, but not without all my problems mentioned. Therefore I started experimenting from 2017. The last 4 years has been amazing regarding health and diet.I mainly eat ketogenic diet, and no seed oils at all. Only carb I do eat occasionally is potato. Potato seems to not trigger anything for me. Current weight is 86kg, and been maintaing around this for years now based on my gym schedule.
I don't care about what streamers says at all. Unless they have tried it themselves for longer than 90 days, then it is invalid in my opinion. Just assuming that my advice is based on advice from streamers and podcasters is plain stupidity. If I can create the food myself from ingridients and animals around me. Then it also means humans did for ten thousands of years prior. Seed oils did not even exist before modern times. I do not count olive oil as seed oil when I say this.
Disclaimer: I have spent hundreds on hours on reading shit like this. How much time did you spend on the topic food? Did you transform yourself from trial and error?
You can bring it down to 70, get lean
All the big meta-analysis studies show it isn't really bad for you. Do you have a study to show the contrary?
Ok, smoking, air pollution, mining runoff and water table poisoning, industrial waste, low-nutrient density foods, processed foods, sugary foods, red meat, Soda, energy drinks, lack of preventative care, lack in general of practical and affordable healthcare, alcohol, I could go on with hundreds of other things. But sure, seed oils are the problem. All of these are much more harmful to society than seed oils. Sure, are they used in excess? I'll grant that, but replacing them with animal fats is awful.
Linseed oil (flaxseed oil) is high in ALA and omega-6 fats, it could cause a REDUCTION in inflammation in some cases. It has the best omega-3:omega-6 ratio I know, and plenty of others are not harmful.
It sounds like you found something that works for you, but please keep the misinformation out of this convo.
Your list is true if you remove red meat from it. Obviously no people should be smoking, drinking, using plastics around food, do some gym or other fitness daily .. and so on.
Congrats on the weight loss (genuinely), but it’s very unlikely seed oils are any sort of factor in themselves.
Here's the experts showing that meat is heavily linked to cancer:
"The International Agency for Research on Cancer (IARC) classifies processed meat as a Group 1 carcinogen (meaning it is carcinogenic to humans), and red meat as a Group 2A carcinogen (meaning it is probably carcinogenic to humans)."
https://progressreport.cancer.gov/prevention/diet_alcohol/re...
No idea what part of the world you're in, but my cousin was stage 4 skin cancer, on his way out, and his doctor managed to get him into a clinical trial at Dana Farber in Boston, MA.
Literally saved his life. Experimental immunotherapy program was the trial.
Hoping a miracle comes in your direction somehow, someway.
I have heard about more success stories where people did a 180 on their diet, than those who just keep eating like they did before their diagnosis.
The boring part about this, is that if it does not work, you spent the last part of your life eating really restricted.
She is ER+ and they removed her ovaries and put her into early menopause to prevent it from getting its fuel.
This is probably very unwelcome advice, but I would strongly recommend a spiritual practice of some kind. When things are wretched, slowing down for a moment and turning inward can help. Prayer (to whatever form makes sense) or at least Yoga (something that isn't passive) may be more helpful than meditation in these circumstances, but I appreciate this might not be right for you.
I'll probably be downvoted for my suggestions, but here I go (I'm from France).
I would recommend changing diet, in France the "Seignalet" diet is well known. Avoid sugar, mammal products (dairy, meat).
When you have no known solution to a problem, you have to try some out of the box solutions.
As desperate solutions, try "healers" or personally try Reiki or Zhi Neng Qi Gong or similar techniques. Find one near your home. Be careful: most "healers" are completely crazy (hoping to become gurus), some are money-oriented. Most Reiki teachers are greedy.
Since you have biopsies, find the targets of the specific cell line in question, and research what you can do against them. Ignore the advice that tells you nothing is relevant because it's impossible to reach cytotoxic levels of some compound you're researching in one's system. You don't need chemo-level cytotoxicity. You're nudging the environment in the right direction, not aiming for a response the next day. Consistency wins the day. And that device reeks of scientific reductionism, and ignores things like metabolites, your microbiome, and so on. People in particular downplay the microbiome which seems to be directly involved in the immune system. You need to feed those buggers. For example, it's now established science that those without akkermansia do not respond to immunotherapies like PD-1 inhibitors. How do you get akkermansia? Ellagitannins. Walnuts, pomegranates, etc.
NF-κB is an example of a target. It seems to be involved in most, if not all TMEs. The great news is that plenty of things can downregulate NF-κB. For example, exercise (non-negotiable, the best medicine, if your wife can do any), berry anthocyanins, and even omega 3 DHA and EPA. The latter is in particular interesting because omega 3 is needed in inflammation resolution, and directly affects NF-κB. Anyway, find the appropriate targets, and do what you can do move them.
My other piece of advice is to make sure there are no deficiencies. Do the blood work. Make sure vitamin D levels are up there (they modulate the gut microbiome and immune system), omega 3 index (not free plasma, but the one that measures the actual weight taken up by cells, it's a more expensive test) aim for 8%, and so on. Sun exposure (not for the vitamin D, but also that) is also great for mitophagy. There are studies showing that cancer patients with sun exposure have better survival outcomes than those that don't get any sun.
Sorry you have to go through this. I pray that you and your wife, and everyone else involved have the strength and wisdom to get through this.
A great resource: Cancer Patient Lab. Check them out - they might have longshot suggestions for you. Dr. Dan Flora at St. Elizabeth is an amazingly compassionate oncologist and also might have some ideas for you.
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?
Oh, you mean the findings of the worlds largest study on nutrition?
But yeah, keep eating at Arby’s. That’ll help.
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.
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 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.
> 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).
It begins with "For the millions of uninsured Americans out there..."
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.
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.
Nurse staffing ratios are 1 nurse to 2 kids or less, we get private rooms with a bed for parents, broadband wifi, and extensive food menu to order room service from all day. We also have the email addresses of our oncologists, 24/7 phone number to oncology department, and we got opinions from 4 other cancer centers in the country to confirm treatment was appropriate (luckily there is a lot of data).
But we just went with standard national insurance, and the total cost is never revealed to us so I can't even tell you what it costs on their end.
We reach a certain level of cost, it was maybe around 250 dollars at that time, after that threshold they pay everything for the rest of the year, until the threshold resets
https://johnnyreilly.github.io/reillys-on-tour/rough-road-ah...
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).
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.
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.
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.
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.
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.
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.
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.
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!
FWIW, I have successfully addressed a few personal health issues in collaboration with AI: soft plaque reversal as quantified via CIMT testing, and bringing my slightly elevated blood pressure into normal bounds
And I'm making significant progress in optimizing my health. It's not without its flaws, but I find it's a great interface into the broad field of medical research, and better than any doctor I've known at integrating a broad set of medical data from disparate sources.
That's my anecdote, and here's another: https://www.astralcodexten.com/p/our-ai-midwife
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.)
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.
As someone not from America. Damn.., I can't imagine needing to use vacation days for that kind of treatment.
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.
- 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
Always get a second or third opinion even if you have no doubt in your current provider.
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.
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.
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.
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 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.
Because we need them.
A very significant percentage of my Circle has had (or has) cancer.
-'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.
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.
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...
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...
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.
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.
Stay healthy and have good luck!