• trynewideas 1 day ago

    From a science and pharmaceutical perspective, maybe.

    As the partner of someone in the US dealing with stage 4 cancer in their 40s, who has two hospitals fighting with each other over whether to keep using a chemo drug that's sent them into anaphylactic shock twice in two rounds of chemo because it's _more convenient_ for the infusion clinic to administer, and all of that currently held up by pre-approval from a relative-to-the-rest-of-US good insurance company that's still already allowed $40,000 of in-network medical bills to hit us in just 5 weeks since diagnosis all after hitting the supposed out-of-pocket max?

    From a cancer that had been misdiagnosed as an infection, an iron deficiency, and a benign tumor for four months prior, to give it a massive head start?

    That headline can fuck right and completely off. We might be good at finding new drugs that can fight cancer, but societally we're absolutely shit at fighting this disease.

    • cmrdporcupine 1 day ago

      I feel for you.

      Having lost two friends in their 30s and 40s to breast cancer in the last decade, I have to say that the system seems incredibly incapable of dealing well with the aggressive cancers that younger people (mostly women) get. There's a lot of bias during critical diagnosis stage that causes these cancers to often ignored until too late because the patient is young and "healthy" (not obese, or whatever) and active. And because these women were younger and still had fairly high metabolisms the cancer grew like wildfire.

      I'm in Canada, so different scenario around costs and insurance and the like, but definitely some commonality in health care system dysfunction. In the same period I also lost my still fairly young mother in law to lymphoma that was misdiagnosed as a slow growing mostly-harmless folicular lymphoma.

      • trynewideas 1 day ago

        Yeah, it's been our experience that getting any doctor to take breast and uterus conditions seriously, especially with symptoms that can't be empirically measured, is a nightmare.

        My partner spent most of their months living with this tumor feeling like they were being stabbed to death every 20 to 30 minutes, between the torsioning and it getting pinned against their uterine walls. It should not have taken a third opinion to say, hey, maybe you _do_ need imaging done after all to confirm that your level of pain isn't in fact normal for a UTI that they don't have, or periods that they weren't having at that point of their cycle.

        My partner also should never have had to switch to a menstrual cup so they could measure their own period blood loss across months, just make their own case that 80-100mL of blood lost _per day_, not per period, isn't "heavy but normal".

        • msie 1 day ago

          My sympathies for you.

          I've had bad diagnostic experiences with my mother where I thought: "do I have to be the expert here?"

          My mom had this crippling abdominal itchiness that all the doctors thought was due to her Parkinson's. They did do x-rays, ultrasounds, an endoscopy, a colonoscopy and prescribed cream for her skin but none of that found anything or helped. What they didn't consider were abdominal adhesions that grew BETWEEN her stomach and the abdominal wall. They were invisible in x-rays and ultrasounds. They are easily removed through laparoscopic surgery. A couple of times, I suggested that her splenectomy may have caused some internal scarring that was irritated by her stomach but they didn't listen to me. I feel bad about not pursuing that theory. They did find adhesions in her abdomen during emergency surgery for a perforated colon but she died the morning after.

          • Johnjonjoan 1 day ago

            I'm so sorry for your loss and for this comment if it turns out to be unwanted.

            We can always do more. Don't let that overshadow what you did do. You showed yourself to be a loving and caring daughter/son. Please don't feel bad because you weren't listened to. You already exceeded what was expected of you and I think any parent would be proud.

    • bserge 1 day ago

      > a cancer that had been misdiagnosed as an infection, an iron deficiency, and a benign tumor for four months prior

      It's absolutely maddening that this is not even uncommon. Doctors think they know best, definitely better than you, and will stand by their sometimes quite obviously idiotic conclusions, leaving you helpless. And in some countries with universal healthcare, it's a lot harder to just go find a better doctor. Screw the whole system. I've got more words to say, but I'll stop here.

      I am sorry for what you're going through and wish you all the best.

      • rpmisms 1 day ago

        Yeah, the American free market system is expensive, but man, ~98% survival rate for breast cancer? That's extremely impressive.

        • dboreham 1 day ago

          Long ago, I knew someone who had an undiagnosed brain tumor. Multiple Drs told her she was pregnant.

          • sangfroid_bio 1 day ago

            I have mentioned this before, this is a supply problem. If you do not gatekeep medical degrees with irrelevant non-academic barriers (volunteering, portfolios, admission letters) and mandate medical schools budgets to keep up with new demand, then there would be plenty of doctors and diversity of thought. Let the MCAT standardized test be the only signal for admissions and force the acceptance of medical accreditation based solely on technical competence. Medicine has a scale problem and nobody is trying to tackle it. The American Medical Association recently pulled their collaboration with Khan Academy to further keep up the barriers. At the end of the day, regardless of the complaints of big companies trying to seek "cheaper workers", software engineering as a field is still much more meritocratic than others. Attempts at unionisation and accreditation instead of leetcoding (kicking the ladder hmm?) has all gone absolutely nowhere. Be vigilant about attempts to gatekeep. For too long MBA and public policy institutions spewed the drivel that non-free-access accreditation is the end-all be-all, of the idea that if you do not genuflect before various admissions committees of expensive professional degree schools you do not have the right to take the accreditation exam, that you are a threat to public safety. Imagine where the world would be if the average admissions rate for computer science was 7%.

            • xenospn 1 day ago

              What do you mean? I'm from a country with universal healthcare, and you can just go see another doctor.

              • raffraffraff 1 day ago

                It's not that simple. Sometimes you go to two or even three doctors and they don't take your symptoms seriously. "A mild cough is nothing to worry about, lots of people have mild asthma and don't realise it, have an inhaler", "Everybody gets headaches, it's not abnormal", "Your blood results are perfect", "The X-Ray came up clear". You end up feeling like a hypochondriac. Most of the time the doctors are right. Twice in my life I was convinced that something was very wrong (and thankfully it wasn't)

                Of course, sometimes the doctors are wrong.

                In the last year I lost my sister and our dog to cancer. In both situations, cancer want diagnosed at first. In the case of my sister, the doctor assumed "women's problems" - irregular bleeding, bloating, cramping etc. But the diagnosis came pretty quickly afterwards because it was a very aggressive cancer that soon triggered blood clots, fluid on the lungs and a bunch of other stuff. They could do nothing for her, and catching it earlier wouldn't have helped. It ate through her in about 6 months. The oncologist was up to date on the latest treatments and was discussing her case with the world's best (because she was only 44 and had just had a kid, they did everything they could).

                With our dog, there wasn't a diagnosis for weeks, while he gradually deteriorated. We have an amazing vet, but nothing showed up in tests (blood work, x-rays, physical exams). The only hunch we had was that pain killers seemed to ease his breathing issues - so we took him to get an MRI and found it. We choose to spare him from the pain (he had a very happy 10 years, and wasn't the type that could handle chemo and operations - it would have been incredibly selfish to put him through it for... What, maybe 12 months of health before it comes back?)

                Thing about cancer: sometimes it's treatable and sometimes it's not. I have a whole new respect (read: "fear of") cancer since last year.

                • tazjin 1 day ago

                  > Your blood results are perfect

                  This is if you can even get prophylactic blood tests done, which is not a guarantee in some European countries

                  I had an awful experience with Sweden's health care system when I lived there ~6 years ago, and didn't get actual help until I went to a private doctor via private insurance.

                  Since then, while I still support access to universal healthcare, I personally have stuck entirely to private healthcare instead.

                • He said some

                  • pilsetnieks 1 day ago

                    Which? Because without specifics it's just casting aspersions on the whole concept of universal healthcare. Especially since a major part of OP's point was about costs and insurers.

                    • dguaraglia 1 day ago

                      I feel you. I hate seeing the talking point about seeing other doctors being ‘harder’ in countries with socialized medicine. Most of the debate in the US is centered around how one single system works: Canada. Canada’s system is pretty restrictive compared to pretty much every other European or Latin American country with socialized health care, and conservatives in America have latched to a few shortcomings of that system to paint every other system as worse than the US, when in reality the vast majority of Canadians themselves would favor their systems to the US.

                      It’s almost impossible to have a real conversation about socialized medicine here without encountering a myriad talking points like that one.

              • inspector-g 1 day ago

                The last bit of your comment, regarding misdiagnosis, reminds me of a recent episode of Peter Attia’s podcast The Drive, wherein he interviews an experienced oncologist. Her opinion was strong in that we are overspending in treatment research and underspending in (early) diagnosis research. Her case, as described in the interview, made sense to me and gave me some hope that at least others could benefit in the future from such spending adjustments. But, I am sorry for what you’re going through, and that such a change has not yet taken place from which you/your partner would have benefitted.

                • petra 1 day ago

                  The misdiagnosis problem isn't just a problem in the US, here in Israel, there's also a problem with misdiagnosis.

                  And our healthcare system is considered very good, and uses Single payer, etc.

                  • The incentive for all parties (except the patients) is to increase revenue, rather than decrease costs. Insurance companies may want to reduce costs on a case by case basis, but on a macro level they want to spend more, since they are required to spend 80% of premiums received on treatment. More treatment means higher premiums, which means the 20% not spent on treatment is higher. Hospitals have similar incentives, since a higher top line means a higher bottom line. We need some sort of patient focused agent that is incentivized to minimize long term costs and maximize patient outcomes. Single payer government healthcare systems seem to do a decent job in this role in many countries. If there's a better method I'm open to it, but nothing will change until the economic incentives change or patient bargaining power increases.

                    • jimbokun 1 day ago

                      If they diagnose more illnesses, wouldn't that also lead to more spent on treatments and higher reimbursements?

                      Or do you mean if it's "caught early" the treatments might be cheaper and so less overall reimbursements?

                      For the latter case, moving to a capitation model can't come soon enough:


                      • ghufran_syed 1 day ago

                        It's worth noting that Kaiser is a nonprofit that is both "payer" (insurance company) and "provider" (hospitals and clinics) in the US - so I would argue that they have exactly the right incentives that you outline - maximize patient outcomes for minimal cost. So I don't think you necessarily need the government involved.

                        • kiba 1 day ago

                          My experience with Kaiser is that they from time to time have a clusterfuck system for online payment, and they still charging me high fees for various tests that costs hundred of dollars.

                          • petra 1 day ago

                            This begs the question: Why are for-profits winning over Kaiser, Why isn't the Kaiser model everywhere ?

                            • twunde 1 day ago

                              This is actually two questions:

                              Why do we have for-profit vs non-profit healthcare providers in the US and does that affect how they're run? The main difference is that non-profits tend to be more profitable since they don't pay taxes, but otherwise they're pretty much the same including the high bills. They are required provide some threshold of charity care, but the forms you need to fill out differ from provider to provider.

                              The 2nd question is why aren't there more dual payer-provider systems? There are two big barriers, firstly you need a large amount of capital to start up either a provider or a payer system, to do both you need even more money. Secondly you need expertise in running both a provider and a payer. Over the past decade a number of providers tried adding insurance arms. Many failed. In NY, both Northwell Healthcare and Crystal Run's insurance arms were started and closed (and these are both well-run healthcare systems) [1]. What's been going on recently in healthcare is that insurance companies have been starting joint ventures with providers. Even Kaiser has struggled when expanding in new markets, especially on the east coast (they're mainly on the West Coast where they were started as a way to provide healthcare to workers at Kaiser enterprises)

                              [1] https://www.recordonline.com/news/20190329/crystal-run-to-pu...

                              • ivalm 1 day ago

                                Note only the KP Foundation Health Plan and Hospitals are non profit. The med groups (which employ drs and a lot of other personnel) are for profit.

                                I think both a strength and weakness of KP is that it is not really one organization, but more like 20+ related legal entities. Each region has their own med group/health plan with some regions having their own hospital foundation (some like Georgia do not own hospitals). This means that a lot of work/decision making is extremely siloed and KP National has limited ability to lay down the law. Different Regions and even just medgroup vs health plan within one region often don’t want to share data. Also, KP’s ehr is not cross-region compatible.

                              • tstrimple 1 day ago

                                Because healthcare isn't an elastic good with markets that observes the overly simplistic supply and demand model. It's the entire reason why pro-market capitalists are really bad at trying to solve this problem.

                        • dlumpkin 1 day ago

                          When my partner was 23 they were diagnosed with a recurrence of lymphoma. We went through almost six months of chemotherapy, radiation, a bone marrow transplant, and months in the hospital. All the while I was constantly fighting our "good" insurance for approvals and paying tens of thousands out of pocket. It was the worst season in both of our lives.

                          But today we are actually celebrating our anniversary, and my partner has been in remission for nine years. I hope you find some peace today and know that you are not alone.

                          • softwaredoug 1 day ago

                            My mom was just told she has likely incurable pancreatic cancer, so I’m right there with you.

                            It’s frustrating because my sense is either due to doctors desensitization, or due to economics of cancer treatment, my mom feels like a commodity to them. Not a focus. As my mom said “this probably happened because they didn’t do chemo for 4 months before surgery”. I get a sense of “shrug” or business as usual from the docs. Now its moves into ongoing treatment. Because it’s the right thing? Because the hospital makes money from more chemo?

                            The whole thing leaves me feeling rather cynical

                            • zzleeper 1 day ago

                              I'm in a similar note. Also mom, also pancreatic. Also was told that it was just "her being too stressed", etc. for two months

                              Hard to digest.

                              • e40 1 day ago

                                My best friend just got a diagnosis of stage 4 pancreatic cancer. I've worked with 2 people and have known an additional 4-5 people that have died from this cancer.

                                All my charitable donations will now be going to pancreatic cancer research, if I can find what looks like a good organization. I find it so hard to decide. Anyone have ideas?

                                • danieltillett 1 day ago

                                  Pancreatic cancer is a really, really hard cancer to treat due to the way it tends to wall itself off from the rest of the body. It is near impossible to get any drug to the cancer.

                              • agumonkey 1 day ago

                                When my uncle got cancer I thought, even with the near zero chances, at least we'd get to see a clean battle. But lots of things were disorganized and weak. I also kinda caught a high ranked guy hiding the truth partially (claims no difference between hospitals at first, then boasts about his facility .. mentioning all the benefits of being here in passing, I ask again for transfer he started stuttering saying no difference again)

                                I kinda share your sentiment, there's an industrial aspect in cancer care (which I can understand to an extent) but it hurts when you're living it first hand.

                                ps: I almost miss the early days of cancer where stage 4 cancers were dealt with more motivation and less formalities. Alas.. (based on Vince de Vita book)

                                • Gibbon1 1 day ago

                                  Thing Ive become aware of is a fraction of doctors and hospitals game the metrics by cherry picking patients. Not just with cancer either. That sets up the possibility the the good program actually has worse outcomes. In short that guys facility has better metrics because they avoid patients like your uncle.

                                  • agumonkey 1 day ago

                                    I get your point, and it's highly plausible .. but he was the head of the highest oncology facility in the country so I don't think he's looking for numbers. Now this is an interesting topic.. every year journals list the top 100 hospitals. It would be "fun" if the best ones are the one who picks the most favorable patients u_u;

                                • twunde 1 day ago

                                  About the 40k bills, I would suggest not paying them immediately and talking to your insurance company regularly (yes, it's exhausting and a PITA). Because of their slower systems, they're probably doing billing calculations on a monthly cycle so if you got multiple bills within a time period, their systems haven't realized that you've hit your out of pocket max (in engineering terms you've got multiple concurrent processes running, but they're all using a cached version of your total billed). Also most billing departments take 60-90 days to bill you so your providers are optimized for billing quickly.

                                  Also, if you call in about your bill you can usually get discounts for paying promptly or at least get put on a payment plan.

                                  • trynewideas 1 day ago

                                    Yeah, we're pushing back on it, and I'm dead lucky to not only have an employer, but one that's provided some legal assistance so far.

                                    If anyone wants to turn this thread back around to "what can tech companies do", it's extending legal and financial services to employees who have their backs to the wall in situations like this.

                                    I liked my manager before this, a lot, but I'd take a barrage of bullets for her now.

                                    • twunde 10 hours ago

                                      Actually for anyone who finds themselves in a situation like this: https://www.reddit.com/r/personalfinance/comments/b01179/som... has some great advice. And if you work for a tech company, many are able to really help you (since most tech companies skew young and healthy, ie low-risk, they are able to really push on the insurance companies). I know of at least one case at AppNexus a few years ago

                                  • jcims 1 day ago

                                    I couldn’t agree more, I’ve been down a road similar to yours and understand the frustration and rage. The headline is complete bullshit, it should read something more like ‘it turns out we have way more tools to fight cancer then we ever bothered to look for, does anyone have the courage to put them into practice?‘

                                    • magicalhippo 1 day ago

                                      > From a cancer that had been misdiagnosed as an infection, an iron deficiency, and a benign tumor for four months prior

                                      Someone close to the family had cancer, got it removed and treated. A year or two later they complained about pain the back, also it was getting harder to breathe.

                                      He got multiple checkups and got sent to a physio to help him with the back pain, and some asthma medication for his breathing. Went on for half a year with little improvement.

                                      Then, entirely unrelated, he had to take an x-ray of his shoulder. The x-ray tech noticed something and flagged it immediately. Off to take more scans. Turns out he had tumors in his spine and lots of small ones in his lungs...

                                      The thing that blew me away was this: when he got informed that the tumor had spread, they said "the original tumor you had predominantly spreads to the lungs and skeleton"... Of course he had not been told this before, and sadly he had not inquired about it either.

                                      I'm still at a loss of words for how they thought asthma medication and some back massages would help.

                                      I learned then, and tell everyone I can, that if you get cancer and survive the initial one, you _have_ to ask about where it might spread to. Then be very observant of any changes in those areas.

                                      • voisin 1 day ago

                                        I am sorry to hear what you are going through. I have similar stories of loved ones that went through the same thing.

                                        The future is here, but unfortunately not evenly distributed.

                                        • seebetter 1 day ago

                                          I asked my oncologists and urologists the same question, and they all gave me the same scripted answer. No one knew if vitamins could help my cancer. No one knew if I could affect my IGF1 levels by diet ("I don't know but I doubt that.").

                                          After this, I worked closely with several surgeons and realized how non-curious most doctors/surgeons are.

                                          We create systems and then train individuals to operate within those systemically flawed organizations. The medical industry is incredibly complicated due to each link in the chain collecting their often exorbitant fees.

                                          • Jabbles 1 day ago

                                            It's probably because there is no known or proposed potential mechanism for how "vitamins could help [your] cancer". I bet most doctors try to keep up to date on scientific studies that show promise.

                                            Rather than say "no", they say "there's no evidence". Probably because of the litigious nature of the job.

                                            What do you expect them to do, if there isn't any evidence?

                                            • rpmisms 1 day ago

                                              What's worse, asking about things like vitamins to help cancer treatment gets you labeled as a kook. Wouldn't improving your general health help your body fight cancer?

                                              That would seem to be a reasonable assumption, but you must not like vaccines if you think that way, Karen.

                                          • liveoneggs 1 day ago

                                            your partner is lucky to have an advocate to help navigate a very frustrating system. Take notes, get your questions answered, and keep records of every visit/drug/person.

                                            • romanoderoma 1 day ago

                                              the state of healthcare in US is absolutely horrifyng

                                              How is that even possible that there's a place on earth where middle level engineers are paid 6 figures salaries but as a society they don't care if someone dies in a hospital bed over insurance legalities is completely maddening to me

                                              it's one of those things that I will never understand and accept as normal

                                              • bluedevil2k 1 day ago

                                                That’s a really harsh and unfair statement. The doctors and nurses care tremendously and want to help everyone, hospitals do their best to cure everyone. Yes, insurance sucks, but that doesn’t diminish the quality of the workers and how they’re trying to help you.

                                                • romanoderoma 21 hours ago

                                                  > That’s a really harsh and unfair statement

                                                  I think it's unfair and harsh that life or death are in the hands of private held companies that profit from people desperation.

                                                  > The doctors and nurses care tremendously and want to help everyone

                                                  But US as a society doesn't.

                                                  As an Italian I am heavily taxed just so everyone can benefit from free universal healthcare, regardless of the amount of care doctors and nurses put in their work.

                                                  In US people simply don't want to do it.

                                                  It's a fact, not a judgement.

                                                  To have access to medical attention not having to worry about your finances is much more important than relying of the goodwill of those who work in the healthcare system (and BTW my parents worked for the Italian healthcare their whole life, so I believe you when you say that medical personnel do care).

                                                  If sharing is caring, not wanting to share the tremendous amount of wealth produced in exchange for something that would greatly improve the life conditions of large segments of the population, what is?

                                                  US has the highest healthchare spending per capita in the World, but the lowest life expectancy of the entire west.

                                                  • alecthomas 1 day ago

                                                    It is neither harsh nor unfair, it's reality. Your response is a generalisation. Perhaps you've had a great experience in the past that leads you to believe it to be universally true.

                                                    But not all doctors do care. I lived in the US for four years and we had a child while we were there. During that process we encountered both an obstetrician and a paediatrician who cared very little. The latter in particular.

                                                    Different people are motivated by different things. Some are motivated by wealth, some by prestige, some by compassion, some just by having a stable job. Doctors are people. Particularly in an industry where you can earn a great deal of money, motivations get skewed.

                                                    All that said, the parent comment is also a generalisation. People do care, there are some fantastic, compassionate people working in medicine in the US.

                                                • ChefboyOG 1 day ago

                                                  I agree with everything you've said and have a lot of opinions on this topic, but I just wanted to comment and say how sorry I am for what you and your partner are going through.

                                                  • I am sorry for what you and your partner must be going through.

                                                    There might be other nations where this is less the case. My Italian father in law has lung cancer, and I am able to observe some of the healthcare system in Italy, in relation to cancer patients. My very anecdotal observation is that it seems far better than anything in the US (I live in SF, I assume you live in the US given your comments about in-network medical bills, etc).

                                                    This is just to say that your rage might be directed at one specific healthcare system (US), while other parts of the world might be doing better than that.

                                                    • pyuser583 1 day ago

                                                      The SF medical system is unusually terrible.

                                                      Source: I have a chronic condition, and have lived in quite a few places, including SF.

                                                    • copperx 1 day ago

                                                      I'm curious about what kind of cancer masquerades as iron deficiency, an infection, and a benign tumor?

                                                      • trynewideas 1 day ago

                                                        Internal squamous cell carcinoma originating on an ovary. It never "masqueraded", it was just the kind of thing that causes a person to complain about uterine pain, which in turn causes every doctor they seek help from to apparently turn their brains completely off and blame it on either a UTI or menstruation.

                                                        The more detailed misdiagnoses: heavy but otherwise normal periods from enlarged fibroids causing anemia, a UTI, and then a 7x4cm benign dermoid cyst. (A ROMA test prior to surgery came back with an exceptionally low score, which the gyno surgeon assumed excluded cancer as a possibility, and other tumors on an ovary wouldn't get that large in her opinoin. There was no actual proof of it being a dermoid cyst.)

                                                        The cancer wasn't detected until lab analysis of the removed ovary and uterus showed it had been completely subsumed by cancer. Even then, after the surgery but before the labs, the surgeon said she thought it was endometriosis based on the scarring, which was actually from the cancer's spread.

                                                        The surgery to remove the ovary was considered elective, because the tumor was never considered cancerous until after the surgery. The surgery request was put in between February 23 and 26 to be scheduled ASAP, but insurance stalled on the prior approval until after all elective surgeries here were cancelled due to COVID-19 capacity concerns. (Hospitals never came close to hitting capacity here during the span, and the hospital that eventually did the surgery in June had nearly empty ORs for two weeks prior.)

                                                        The imaging in February hadn't shown any of the scarring, or the spots on other organs showing it had spread, that the post-surgery imaging in June revealed.

                                                        • cmrdporcupine 1 day ago

                                                          Oh man, this is terrifying, and here's the thing... how many of us or our partners start having erratic or 'strange' periods in the pre-menopausal, mid-40s, etc. points of their life? It's happening for my wife -- extremely short cycles, sudden intense periods, etc. and the doctors are kind of like "well this is within the bounds of normal"; not the exact same set of problems as you describe, but some overlap... but the doctor is young, it doesn't feel like she's taking my wife's concerns seriously.

                                                          Do you have any advice on the kind of testing that _could_ have diagnosed your partner's situation earlier?

                                                          And... wow... glad to not have to deal with the insurance situations you describe. But here the challenge is getting them to take you seriously enough to get access to imaging.

                                                          • trynewideas 1 day ago

                                                            > Do you have any advice on the kind of testing that _could_ have diagnosed your partner's situation earlier?

                                                            I'm not a doctor, but in our case squamous cell-specific antigen tests. And they won't be effective unless the tumor is already relatively advanced.

                                                            Barring that, abdominal imaging and an ovariectomy, which is what we eventually got ordered -- as noted the challenge was getting my partner's uterine pain taken seriously enough to warrant a referral for imaging, then fighting the insurance company to get prior approval in a timely manner.

                                                            Toward that point, it would help to measure the amount of bleeding as best as you can, just to have a baseline, and also to frame as precisely as you can how erratic her cycles have become. My partner used period tracking apps to collect frequency and length data, and kept their own log to measure relative intensity and the amount of blood. A menstrual cup was key to the latter, and it was a big adjustment to switch to one, but wound up being the empirical data needed to take the pain complaints seriously.

                                                            If you want to dive into some literature, a 2014 study [1] does a good job describing the relationship between ovarian cysts and ovarian squamous cell carcinomas. I can't stress enough that my partner's condition is rare (in this study, 4 out of 6,260 MCT patients), but not unheard of, and I can say at least from personal experience that this six-year-old assessment of it hasn't really changed:

                                                            > Since there is no definite symptom or sign, even in radiologic imaging, it is challenging to preoperatively diagnose ovarian SCC arising from MCT unless the tumors are advanced-stage. Thus, most cases reported to date seem to be diagnosed by postoperative histopathologic analysis. However, an unexpected diagnosis of tumor malignancy during surgery may interrupt performing complete surgical management at that time, which can adversely affect prognosis. Moreover, it is well recognized that SCC-MCT has a poor prognosis, and no standard treatment is available because of its rarity. ... More evidence supporting these strategies for the management of SCC-MCT by large, multicenter studies is required.

                                                            [1] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4124088/

                                                        • liveoneggs 1 day ago

                                                          acute myeloid leukemia

                                                          • callmeal 1 day ago

                                                            >I'm curious about what kind of cancer masquerades as iron deficiency, an infection, and a benign tumor?

                                                            The kind of cancer where the patient can be easily dismissed by the doctor because of course they know best.

                                                            • arcticbull 1 day ago

                                                              "...doctor because of course they know best" is a really strange thing to say. I don't mean to invoke paternalism here -- but between a patient with Google and a doctor with years of medical training, residency and practice, they more than likely do know best. At least, better than the patient. They won't always be right, and you can ask for a second opinion, but they do know better. If they didn't, you could practice your own medicine.

                                                              • callmeal 12 hours ago

                                                                >"...doctor because of course they know best" is a really strange thing to say.

                                                                Personal experience and paying a little attention to the news is how I came to that conclusion. The truth remains that in this country (USA) if your skin color does not match that of the majority, you should not trust what a doctor tells you.

                                                                [0] https://www.bbc.com/future/article/20180518-the-inequality-i...

                                                                [1] https://www.nytimes.com/2018/05/03/well/live/when-doctors-do...

                                                                [2] https://www.healthline.com/health/mental-health/doctors-gasl...

                                                                [3] https://www.vice.com/en_us/article/qvedxd/doctors-dont-alway...

                                                                • satyrnein 1 day ago

                                                                  The doctor certainly knows better than the patient, all else being equal. However, the patient has much more time, motivation, and contextual information about their situation. This leads to situations (some of the time) where a patient who has done a lot of research can outperform a doctor who spent 10 minutes doing an exam and making an educated guess based on demographic factors.

                                                                  • arcticbull 1 day ago

                                                                    I would love to see a study to back that up. I just don't think that in aggregate at the population level misdiagnoses would go down if people did it themselves. This study of online tools wasn't glowing [1].

                                                                    "In comparison, other studies have found that Internet search engines for urgent symptoms led to content that suggested emergency medical treatment only 64 percent of the time." [1] It also found tooling less effective the less immediate the need for care was. "Overall, the software algorithms that the researchers studied listed the correct diagnosis first in 34 percent of cases." [1]

                                                                    [1] https://news.harvard.edu/gazette/story/2015/07/self-diagnosi...

                                                                    • satyrnein 1 day ago

                                                                      Certainly not at the aggregate level. But if you have a chronic condition, and your doctor's advice isn't working, I think it's reasonable to do your own research even though in general the doctor knows best.

                                                                • In some ways I do practice my own medicine and doctors are just QA. I know when I need antibiotics, or I have a strong hunch, I just need them to confirm and write the script (They do this over apps now). My GP wasn't much help with a problem I was having, so I had to track down a specialist who would listen, eventually I was found to be RIGHT, and again just needed the doctor to write the script.

                                                                  Not saying they don't know more than me about the body, naming its parts and what they do, but I know best when something isn't right and the amount of doctors you have to go through to get them to admit "OK, you feel bad, something is wrong, let's have a look" and actually do something other than go through the motions is astounding.

                                                                  Edit: Leaving this but kind of wish I hadn't left this comment. I had a point to make, and maybe its in here, but this just comes off stupid. Sorry.

                                                                  • arcticbull 1 day ago

                                                                    > I know when I need antibiotics, or I have a strong hunch, I just need them to confirm and write the script (They do this over apps now).

                                                                    Frequently people do not know when or if they need antibiotics. People often end up taking antibiotics for viral infections (which do nothing). The CDC points out that taking antibiotics for viral infections can do more harm than good [1] and this leads to antibiotic resistance [2]. It's pretty unlikely a doctor would prescribe you antibiotics for a viral infection, certainly at the population level. This is why they're in the loop.

                                                                    There's a lot that goes into prescribing antibiotics. For instance, do you have a bacterial, viral, or amoebal infection? Is it gram-positive or gram-negative? Broad-spectrum antibiotic or targeted? Is it worth the potential risks to your gut health? [3] How about side-effects and contra-indications? What if you have something else entirely?

                                                                    [1] https://www.medicalnewstoday.com/articles/237975

                                                                    [2] https://www.hopkinsmedicine.org/health/wellness-and-preventi...

                                                                    [3] https://www.sciencedaily.com/releases/2018/10/181023110545.h...

                                                                    • whatshisface 1 day ago

                                                                      You are overlooking the role of intelligence in the success rates of anything you try to do yourself. Fixing your car, running a business, investing and researching your own disease are all tasks that some people are far more likely to succeed at than others.

                                                                  • adrian_b 1 day ago

                                                                    Unfortunately, I have learned from experience that it is a great mistake to trust that the doctors know best, regardless how experiences and how expensive they might be.

                                                                    Regarding treatments, yes, most medical doctors are competent and it is likely that they know better than you.

                                                                    On the other hand, regarding diagnosis, errors are frequent, for 2 reasons:

                                                                    1. Most medical doctors are too narrowly specialized and they are experts in their narrow fields but ignorant about other medical domains. Unless you have an obvious problem it is quite likely for you to go to a medical doctor of a wrong specialty and receive a misdiagnosis instead of being redirected to an appropriate specialist.

                                                                    2. Each human has a complex medical history, which is normally unknown to the doctor who attempts to diagnose you. The doctor might have some past data provided by you or by other doctors who treated you in the past, but that is not enough to know well your characteristics. Because of that, the doctor will try to attribute your symptoms to the most frequent causes encountered at other patients, even if there are reasons in your history that make those causes completely improbable.

                                                                    I have experienced this several times, when I have received a misdiagnosis and I could not believe it because I know my body and I know how it feels, even if the doctors were right that the symptoms were frequently caused at other people by what they thought to be the correct diagnosis.

                                                                    Every time, second opinions confirmed that I was right, because even if those doctors had experience with thousands of other patients, I have an experience of half a century with my body and I understand it better than anyone can understand it after 5 minutes of examination.

                                                                    Regarding cancer, my father broke his arm and he went to an orthopedist, who put a misdiagnosis of osteoporosis.

                                                                    In fact he had bone cancer. Even if it was a cancer form that has good chances of treatment with some recent drugs, my father lost half of year due to the misdiagnosis and by then it was too late.

                                                                    I have read a medical manual and my father had obvious symptoms of bone cancer, exactly as they were listed in the manual, word by word (continuous all-day pain, which was confused with arthrosis by the doctor, followed by a bone fracture as a result of small effort, which should not have been enough to fracture the bone, which was confused by the doctor as being caused by osteoporosis).

                                                                    A competent doctor should have recognized that even if he had assigned the symptoms to what he thought as the most probable causes, there are also other possible causes, e.g. cancer, and he should have sent my father to supplementary investigations, e.g. scintigraphy, which would have discovered immediately the cancer and allowed adequate treatment.

                                                                    Unfortunately, I was not prescient enough to have read the medical manual before the problem appeared, because I naively trusted that whenever medical problems will appear I will just pay professionals and they will solve the problems.

                                                                    It did not happen so. My mother also had serious problems because of a misdiagnosis. In her case it was not cancer, but I have also discovered after reading the appropriate textbook that her symptoms were completely typical, but also unknown to the doctor (of a wrong specialty) which consulted her first.


                                                                    • arcticbull 1 day ago

                                                                      Misdiagnosis is a problem -- and one that hopefully technology will help us address further -- but what I'm saying is that misdiagnosis would in aggregate be much higher if people did it themselves. Its a common joke that first-year medical residents will diagnose everyone with everything. Second opinions, to your point, help mitigate the issue, but we have to look at the population level.

                                                                      I'm very sorry for what happened to your father, and your family. The fact is that you wouldn't have known to look for bone cancer in the specific situation after skimming the medical manual unless you had proper training and experience. In retrospect, the symptoms fit, but they fit the original diagnosis too. And the original diagnosis was far more likely. Diagnostics is as much art as it is science, every single human is different -- to the extent internal anatomy often looks absolutely nothing like textbooks and varies hugely from person to person. [1]

                                                                      And yes, in aggregate, experience with thousands of bodies is far more valuable than experience with just your own.

                                                                      We must find ways to be better at this, I just don't think DIY will get us there.

                                                                      [1] https://sciencenorway.no/blood-community-medicine-forskningn...

                                                                    • codecamper 1 day ago

                                                                      How old are you? How much experience with medical doctors have you had or the people you love had?

                                                                      I've had nothing but bad experience. Complete crap on every count.

                                                                      • Alex3917 1 day ago

                                                                        > If they didn't, you could practice your own medicine.

                                                                        Which most people do.

                                                                        • arcticbull 1 day ago

                                                                          No, they don't. They practice first-aid. There's a big difference between slapping on a band-aid and a DIY hip replacement, or cancer diagnosis.

                                                                          Maybe this is a uniquely American thing and with the self-sufficiency narrative being so at the fore. I don't fix my own car because I'm not a mechanic -- I share the symptoms with a professional. I don't tell my doctor what to prescribe or what's wrong with me because I'm not a doctor -- I share my symptoms with a professional.

                                                                          As a concrete example, advertising prescription drugs direct to individuals in Canada is illegal. It's illegal in most countries. [1] As it should be!

                                                                          [1] https://www.cmaj.ca/content/169/5/425

                                                                          • Alex3917 1 day ago

                                                                            75%+ of American adults take supplements, and that’s just one of many different self-directed medical activities that people practice.

                                                                            • arcticbull 1 day ago

                                                                              I think you're unintentionally proving my point.

                                                                              Dietary supplements largely don't work, at all, and some of them are outright harmful. They basically do nothing, at best. So 75% of America probably, er, shouldn't. This is something a medical professional might tell you if you asked them. This visualization should help you understand the magnitude of just how little dietary supplements do -- it came up here on HN a while back as an example of a beautiful visualization [1].

                                                                              Most multivitamins are totally worthless unless you're eating an incredibly poor diet. There's actually an association between multivitamin use and an increase in all-cause mortality [2] with a more pronounced effect in smokers [3].

                                                                              So, I re-iterate, there's a reason these people went to school to become doctors.

                                                                              [1] http://www.informationisbeautiful.net/visualizations/snake-o...

                                                                              [2] https://jamanetwork.com/journals/jamainternalmedicine/fullar...

                                                                              [3] https://academic.oup.com/aje/article/152/2/149/87699

                                                                              • Alex3917 1 day ago

                                                                                > I think you're unintentionally proving my point.

                                                                                My point was that the majority of American adults practice their own medicine, which is factually correct.

                                                                                • arcticbull 1 day ago

                                                                                  Again, in context, what I said was that there's a big difference between first aid and supplementation and a diagnostics and treatment. Nobody is arguing people don't take supplements and that probably technically counts as medicine, however it's clear in context that's not the kind of medicine I was referring to. Also, people are by and large bad at it, and shouldn't.

                                                                      • chromatin 1 day ago

                                                                        Thanks for your insightful contribution to the thread. I also hope to hear from the original poster about the type of cancer, because the story is interesting.

                                                                  • xenospn 1 day ago

                                                                    Just to add to your point - I think almost everyone reading this will have a story like this that they have either experienced firsthand, or had a relative/friend go through. I know I sure do.

                                                                    • copperx 1 day ago

                                                                      Of course. 1/3 of the population will get cancer. It affects every person during their lifetime, directly or indirectly.

                                                                    • grecy 1 day ago

                                                                      I'm sorry you're going through this, but please don't confuse the terrible healthcare system of your country with the fight against cancer in general.

                                                                      A few years ago my Mum was diagnosed with Stage 4 lung cancer (certain death). She had many rounds of radiation and chemo, and after initially being given 6 months to live, she was put on cutting edge trial drugs and given treatments that where unheard of just a few years ago.

                                                                      For almost 2 years she did really well, living a very high quality of life while the doctors got very close to nailing the cancer. It was of a type that their drugs couldn't quite attack fully, so it eventually won and we lost my Mum 2.5 years after being diagnosed.

                                                                      After all that treatment and care and hospital stays and cat scans and x-rays the total amount my family paid was $0 and zero cents.

                                                                      • Asooka 1 day ago

                                                                        I get the acute feeling that we're training medical doctors mainly in theory and giving them a very good understanding of human biology, but skipping the crucial step of training them to treat people. I myself had to see several professionals until figuring out my problems are mainly due to severe Vitamin D deficiency. A test that cost all of 30$ to do. It's hard to find someone who doesn't see you and immediately goes "You're under 50? It's stress. You're over 50? It's supposed to hurt, you're old. (My mother was told this, almost verbatim)". To put it another way, if I did my job, the way most doctors seem to do theirs, I would be out of a job. Every other professional is required to understand and practise customer relations, but doctors are somehow given a pass to be almost terminally dismissive of customer requests.

                                                                        • I'm sorry for your pain. Unfortunately, as it's said: "The future is already here, but it's unevenly distributed."

                                                                          Healthcare isn't designed or trained to be cutting edge. Leave the beaten path and you'll end up in court.

                                                                          As for the societal level, if you're talking about the USA, we're shit in general. Look at opioids and obesity. Those two alone consume significant resources. Limited resources. Resources that can be used by people in your shoes.

                                                                          • tornato7 1 day ago

                                                                            If I learned one thing from fighting a (not cancer) disease, it's that you have to be the one responsible for your own recovery. Don't just sit there and say "please save me doc!" You better start reading about the latest research 6 hours a day, make massive comparison charts about treatment options, find the best doctors you can and get opinions from all of them, network with people going through what you are for support and advice, reach out to friends and family for help.

                                                                            The best thing I did for my treatment was to expand my options beyond modern medicine to naturopathic medicine and East Indian medicine. Let me tell you, I was eating clay, shoving weed up my ass, shooting myself with infrared lasers, literally so many off-the-wall treatments it was like a full time job. And I do not care if 90% of them were useless, because by the end of the next year I was in full remission.

                                                                            • deergomoo 1 day ago

                                                                              What an absurd and dangerous notion.

                                                                              It's bad enough to imply that someone dealing with the physical and emotional debilitations caused by both the disease and the treatment, not to mention secondary concerns like the effect on employment and finances, essentially isn't trying hard enough. But suggesting pseudoscience that could very well make things worse is deplorable.

                                                                              I'm truly glad it worked out for you, but as someone who has had cancer this is an absolutely awful position to take.

                                                                              • tornato7 1 day ago

                                                                                You have to take some responsibility for your health, and the things you do or don't do have a big effect on your long term outcome. If you want to call that insulting, fine.

                                                                                To be clear every treatment I had was recommended or approved by a medical doctor, that's part of the research and discussion with my doctors. I absolutely think that's important. And having a diverse team of doctors from different backgrounds both in and outside of mainstream U.S. medicine is useful.

                                                                                • minerjoe 1 day ago

                                                                                  Naturopathic medicin is not "pseudoscience". I've seen first hand friends that trusted main-stream cancer doctors and were hurt almost to the point of death. It wasn't until they turned to alternatives that they improved and survived.

                                                                                  It doesn't take much of a history lesson to find many many examples of Allelopathic medicine causing much more harm than good. The OP details that they found out that the mechanism at work was not what the doctors thought. How many other mistakes are they making on a daily basis?

                                                                                  You embrasing the status quo, which is demonstrably killing people daily with poisons, and calling everything else "pseudoscience" is truly a deplorable stance.

                                                                                  I truly believe that humans, if we make it that far, are going to look back at this time of "the war on cancer" as one of the most disgusting and, obvious in hindsight, destructive things we've ever forced onto people in the chase for the god mighty dollar.

                                                                                  The financial incentives of the pharmaceutical companies and the medical profession do not make them work for our benefit. A cure would be a huge loss of one of the largest money making schemes ever devised.

                                                                                  There has been good research on cancer treatements that do not destroy the immune system, nor require poisoning. A cursory scan on sci-hub for medicinal mushrooms and cancer yeild a hundred hits [1] with much to learn from. Studies from 20 years ago showing how taking certain mushrooms while undergoing chemo and/or radiation can greatly reduce side effects and improve survival rates.

                                                                                  This is science. This is also science that the medical and drug profession ignores, to their own discrace and shame.

                                                                                  The GF was stating a hard fact, you have to do your own research because the baises and conflicts of interest of the medical profession and the drug companies blind them to less damaging and much less profit driven treatments.

                                                                                  [1] http://gen.lib.rus.ec/scimag/?q=mushroom%20cancer

                                                                                  • arcticbull 1 day ago

                                                                                    (1) Naturopathic medicine by and large is pseudoscience and confirmation bias. Some people with cancer spontaneously go into remission. One study found 22% of breast cancers undergo spontaneous regression. [1] This includes people taking pseudoscientific treatments. People then point to the naturopathic medicines are the proximate cure, but in reality, it would have gone away with or without. This is why we have double-blind studies that account for this, and for the placebo effect -- which is super strong, and growing stronger as our faith in medicine grows.

                                                                                    (2) 'You embrasing the status quo, which is demonstrably killing people daily with poisons, and calling everything else "pseudoscience" is truly a deplorable stance.'

                                                                                    Chemotherapies are toxic treatments, and they are toxic in no small part because we are looking to kill off specific tissue. Unfortunately few chemotherapies are totally specific, and work is being done to improve them, including delivery mechanisms. Radiation treatments obviously also destroy tissue, but again, every effort is made to improve target specificity.

                                                                                    (3) "...we've ever forced onto people in the chase for the god mighty dollar."

                                                                                    In many countries, doctors are public servants, and the government run programs negotiate hard with pharma companies to knock down prices, instead of, you know, passing them on to the "customer."

                                                                                    (4) "The financial incentives of the pharmaceutical companies and the medical profession do not make them work for our benefit. A cure would be a huge loss of one of the largest money making schemes ever devised."

                                                                                    Far be it from me to support the crazy profiteering of big pharma, however, I think you'll see them finding ways to profit from one-off cures for chronic conditions like Sofosbuvir for Hep C. They'll just charge medical systems what its 'worth' in terms of how much a lifetime supply of Hep C treatments would cost -- minus a little so the system benefits over the status quo too. In this case, $84,000. Not to mention the company that developed it was acquired for $11 billion dollars by Gilead. [2] But of course quickly after others will follow. [3] This is why patents last 20 years.

                                                                                    (5) "There has been good research on cancer treatements that do not destroy the immune system, nor require poisoning. A cursory scan on sci-hub for medicinal mushrooms and cancer yeild a hundred hits [0] with much to learn from. Studies from 20 years ago showing how taking certain mushrooms while undergoing chemo and/or radiation can greatly reduce side effects and improve survival rates."

                                                                                    So does fasting, no mushrooms needed. [4] But in both your studies and mine it was the "poison" chemotherapy that was treating the cancer, not the mushrooms.

                                                                                    The really ingenious work being done these days is finding ways to point our immune system at cancer and letting it do the hard work for us.

                                                                                    [1] https://en.wikipedia.org/wiki/Spontaneous_remission

                                                                                    [2] https://www.scientificamerican.com/article/we-now-have-the-c...

                                                                                    [3] https://www.theguardian.com/science/2018/apr/12/non-profits-...

                                                                                    [4] https://osher.ucsf.edu/patient-care/integrative-medicine-res...

                                                                                • specialist 1 day ago

                                                                                  Caveat emptor is the status quo, not the ideal.

                                                                                • drocer88 1 day ago

                                                                                  U.S. cancer treatment is the best in the world. The greatest research, innovation and results[1] happen in America. These are products of American Society. American Society is actually pretty good at fighting this disease.

                                                                                  We devote huge resources to preventing, diagnosing and treating and have made great progress. The CAR T-Cell innovations are very promising and American research is making it work.

                                                                                  Families often face tragedy but U.S. Medicine is leading the world in this fight.

                                                                                  [1] https://worldpopulationreview.com/country-rankings/cancer-su... .

                                                                                  • izacus 1 day ago

                                                                                    From a pure conversational/social/emotional perspective, you maybe shouldn't lecture someone who's actually going through the first hand experience with the disease.

                                                                                    • drocer88 1 day ago

                                                                                      Most families deal with cancer at some time. Few are unaffected. Maybe we need focus on the hard part of fixing things. We can acknowledge emotions, get moderation of opinions and celebrate empathy but we need measurable results.

                                                                                      U.S. Society is delivering on these.

                                                                                      • arcticbull 1 day ago

                                                                                        > U.S. Society is delivering on these.

                                                                                        It simply isn't because of the cost of care is not appropriately distributed. Much of the population can't actually afford the wonderful care you espouse, and if you read down you'll see the US isn't necessarily actually better. More screenings and more diagnostic tests don't necessarily lead to better outcomes -- prostate tests are a great example of this -- but do increase the 5-year survival rates (in that the front end is extended but the back end isn't). What they don't do, though, is increase the cure rates.

                                                                                        In no small part because patients are being "sold" medicine, testing and treatments, and are profited off of. Similarly, doctors are getting sued senselessly. The lawsuits aren't just a nuisance, they're part of the reason these unnecessary tests are carried out in many cases; not doing so would create a liability.

                                                                                        I mean, OP got hit with $40,000 in bills with insurance -- you can't look at me with a straight face and call that world-class.

                                                                                        That's a deep and utter failure of society for allowing this to happen.

                                                                                    • DanBC 1 day ago

                                                                                      > Specifically, the U.S. has the best cancer survival rates in the world.

                                                                                      This is a misunderstanding of what "5 year survival rate" means. You're missing "lead time bias", and "over diagnosis bias".

                                                                                      From Risk Savvy by Gerd Gigerenzer

                                                                                      --begin quote

                                                                                      While running for president of the United States, former New York City mayor Rudy Giuliani said in a 2007 campaign advertisement:1

                                                                                      "I had prostate cancer, 5, 6 years ago. My chance of surviving prostate cancer—and thank God, I was cured of it—in the United States? Eighty-two percent. My chance of surviving prostate cancer in England? Only 44 percent under socialized medicine."

                                                                                      For Giuliani, this meant that he was lucky to be living in New York and not in York, since his chances of surviving prostate cancer appeared to be twice as high. That was big news. It was also a big mistake. Despite the impressive difference in survival rates, the percentage of men who died of prostate cancer was about the same in the United States and the UK.2 How can survival be so different when mortality is the same?

                                                                                      The answer is that when it comes to screening, differences in survival rates don’t tell us anything about differences in mortality rates. In fact, over the past fifty years, changes in five-year survival for the most common solid tumors had no connection with changes in mortality.3 There are two reasons.

                                                                                      How Rudy Giuliani Was Misled

                                                                                      The first reason is called lead time bias. Imagine two groups of men with invasive prostate cancer. The first consists of men in Britain, where screening for prostate-specific antigens (PSA) is not routinely used and most cancer is diagnosed by symptoms. The second group is made up of men in the United States, where routine use of the test began in the late 1980s and spread rapidly, despite the lack of evidence that it saves lives.

                                                                                      In the British group, prostate cancer is detected by symptoms, say at age sixty-seven (Figure 10-1 top). All of these men die at age seventy. Everyone survived only three years, so the five-year survival is 0 percent. In the U.S. group, prostate cancer is detected early by PSA tests, say at age sixty, but they too die at age seventy (Figure 10-1 bottom). According to the statistics, everyone in that group survived ten years and thus their five-year survival rate is 100 percent. The survival rate has improved dramatically, although nothing has changed about the time of death: Whether diagnosed at age sixty-seven or at age sixty, all patients die at age seventy. Survival rates are inflated by setting the time of diagnosis earlier. Contrary to what many people have been told, there is no evidence that early detection and subsequent treatment of prostate cancer prolongs or saves lives.

                                                                                      The second reason why survival rates tell us nothing about living longer is overdiagnosis bias. Overdiagnosis happens when doctors detect abnormalities that will not cause symptoms or early death. For instance, a patient might correctly be diagnosed with cancer but because the cancer develops so slowly, the patient would never have noticed it in his lifetime. These cancers are called slow-growing or nonprogressive cancers.4 PSA screening detects both progressive and nonprogressive cancers but, like most other cancer screening tests, cannot tell the difference between them. Figure 10-2 (top) shows 1,000 British men with progressive cancer who do not undergo screening. After five years, 440 are still alive, which results in a survival rate of 44 percent. Figure 10-2 (bottom) shows 1,000 Americans who participate in PSA screening and have progressive cancer. The test, however, also finds 2,000 people with nonprogressive cancers—meaning that they will not die from them. By adding these 2,000 to the 440 who survived progressive cancer, the survival rate leaps to 81 percent. Even though the survival rate increases dramatically, the number of men who die remains exactly the same.

                                                                                      • vharuck 1 day ago

                                                                                        Funny thing: in my job, I've calculated the relative survival rate of prostate cancer (the difference in mortality risk between people diagnosed and a similar population in age, sex, and race). Cause of death is not considered, only that there was a diagnosis (avoids complicate deaths and captures indirect influence). It'll often be that men diagnosed with prostate cancer have a better 5-year survival rate than men who did not receive a diagnosis. And that's after excluding non-invasive tumors.

                                                                                        Why? No definite idea right now. Possible correlation: a diagnosis happens when a man actively cares about his health (regularly brings up troubles with his primary care physician, asks for screening tests), which also implies he has the money to do so. This is also bolstered by the fact the survival stats don't include diagnoses at time of death. So it misses the guys who never got tested before it killed them.

                                                                                        By the way, if you look up the relative survival stats on the CDC's website, they won't show anything above 100% relative survival. Im short, they never let the added risk of death go below zero. Which is dumb, in my opinion. It's editing data because it violates the assumption the model is perfect.

                                                                                        • danieltillett 1 day ago

                                                                                          Does this correlation still hold if you look at men below a certain age? Since prostate cancer increases with age then you could get a bias towards the more healthy as the non-prostate cancer peers die earlier of some others cause.

                                                                                          • vharuck 1 day ago

                                                                                            I can't answer that until tomorrow (vacation). We try to reduce bias from competing causes of death by using the Pohar Perme method [0].

                                                                                            Though I now wonder if there is a larger difference for prostate cancer than other cancer types. It's commonly believed by cancer researchers that, if they autopsied everyone, they would find a prostate tumor in most men over 65.

                                                                                            [0] https://onlinelibrary.wiley.com/doi/10.1111/j.1541-0420.2011...

                                                                                        • arcticbull 1 day ago

                                                                                          Thank you for sharing this quote, I learned about this a long time ago and have been looking for a compelling way to make the case. People are often surprised at how ineffective early and frequent screenings can be -- depending on the disease of course. The risk of unnecessary exploratory surgery and other adverse effects of a false positive can actually add to aggregate patient risk, not reduce it.

                                                                                          • minerjoe 1 day ago

                                                                                            One of my mentors was recently diagnosed with prostate cancer due to an elevated PSA test. He is 76 years old. No symptoms. His father died of prostate cancer at the age of 96. The doctors scared him into treatment (the ol' if you don't do this you might die trick) and proceeded to irradiate his abdomen damaging his nerves and causing his legs to atrophe and his outcome on life to plummet. He's just now getting around to realizing that the doctors are the ones that hurt him and he has no intention of listening to them again.

                                                                                            • DanBC 1 day ago

                                                                                              Gerd Gigerenzer is pretty good, and he has a few books.

                                                                                              There are also the "fact boxes" and "icon arrays" on this site: https://www.hardingcenter.de/en/early-detection-prostate-can...

                                                                                          • MrLeap 1 day ago

                                                                                            It sounds like a lot of his issues arise from human factors. For you to talk about the qualities of how good cancer treatments in the US are -- when I'd call the OP's experiences a result of gross negligence -- is the most tone deaf thing I can remember ever reading.

                                                                                            • donatzsky 1 day ago

                                                                                              That doesn't mean that the system isn't dysfunctional. Merely that it's less dysfunctional than elsewhere.

                                                                                              • cmrdporcupine 1 day ago

                                                                                                Or that its excellence in treating cancers is biased towards certain populations. I dare say cancer treatment in people 65+ is bound to be better. And higher life expectancy in general seem to point to that. The cancers of the elderly are slower growing, in many demographic scenarios those people have more money & voice to get better treatment, and because they're old and often have comorbidities the doctor is more likely to diagnose them.

                                                                                                Contrast this with young mothers who are breastfeeding or have just finished breast feeding and go to their doctor complaining of discomfort or oddities in their breasts only to have it 'diagnosed' as a blocked duct when it's actually cancer. Or a young man complaining of neck or back pain that ends up being a cancer but doctors have been trained to effectively screen out back pain as a common complaint. Or chronic fatigue, etc. etc. They look young, fit... they're probably just anxious.

                                                                                                After watching friends or family die this way, with cancers undiagnosed until they proceeded to stage 4 despite multiple queries to their doctors, it's absolutely terrifying. You start to question every ailment you have.

                                                                                                So you really wonder how much the fact that baby boomers are still the dominant demographic group is altering the numbers. We might just be good at treating cancers in the elderly and that has shifted survival statistics.

                                                                                                • ghufran_syed 1 day ago

                                                                                                  You certainly highlight the difficulty of making an early and correct diagnosis in a patient group where that diagnosis is extremely rare. The real question is how much of this is cognitive bias, and how much is a reasonable balance between the harms of overtesting and the harms of misdiagnosis and late diagnosis.

                                                                                                  The first is absolutely the responsibility of the medical profession, and we need to improve that. And if it was obvious malpractice, the family should sue the doctor or the healthcare organization that employs them - unfortunately I think there do still exist some healthcare organizations where the only way to get them to do the right thing in future is a risk of (another) massive lawsuit.

                                                                                                  On the other hand, it's also a good doctor's responsibility to prevent harm from overtesting https://www.newyorker.com/magazine/2015/05/11/overkill-atul-... . And the US is probably worse in this regard than other countries. In fact, a quote front hat article specifically refers to back pain: "The researchers called it 'low-value care.' But, really, it was no-value care. They studied how often people received one of twenty-six tests or treatments that scientific and professional organizations have consistently determined to have no benefit or to be outright harmful. Their list included doing an EEG for an uncomplicated headache (EEGs are for diagnosing seizure disorders, not headaches), or doing a CT or MRI scan for low-back pain in patients without any signs of a neurological problem (studies consistently show that scanning such patients adds nothing except cost)".

                                                                                                  But sometimes it's just bad luck, that a particular patient has a complaint that on average would not benefit from an MRI, but in their particular case, they probably would have.

                                                                                                  Unfortunately, the only way for a non-medical person to tell if a particular patient's situation lies in the first group or the second is by suing the doctor (assuming that actually asking the doctor why they didn't do the test failed to provide a satisfactory answer). Most medical malpractice lawyers are "no win, no fee", so you can usually get a free consultation with a law firm that specialises in medical malpractice cases, and if they think there is a case there, they will take on the case. If they don't take on the case, it's usually because the care was reasonable (and therefore defensible), even though there was a terrible outcome.

                                                                                                  None of that takes away from the pain suffered by patients and families in this kind of situations, but sometimes knowing there is a way to find out more and maybe address a specific injustice can be helpful.

                                                                                                • b34r 1 day ago

                                                                                                  It’s also not uniform. If you’re in a “medical tourism city” you’re much more likely to get high quality treatment than say a regional clinic.

                                                                                            • jcims 1 day ago

                                                                                              I was forced to dive headlong into understanding cancer therapy 2 1/2 years ago. It was obvious at the time that this was the correct direction to head, developing an entire therapeutic ecosystem to give the body every possible advantage and assail the disease with every possible disadvantage in order to get the desired outcome.

                                                                                              However, what I saw was a rather bizarre and disturbing fetish in the pharmaceutical and medical communities for ‘monotherapies’. I believe I understand the allure, if you find one thing that works, the proverbial silver bullet, that’s the best case scenario for treatment. It’s also quite obviously the best case for shareholders and investors, but let’s set that aside for now.

                                                                                              For the sake of future patients, I do hope that medicine and regulators deprioritize the search for monotherapies and receive the type of analysis represented in this article with open arms. In particular, I hope that the ’standard of care’ is given some flexibility so that doctors are able to adopt low risk adjunct therapies in order to improve outcomes and the amount of data available for continued research and improvement of treatment plans.

                                                                                              • iskander 1 day ago

                                                                                                Re: monotherapies. This hasn't been my experience.

                                                                                                Almost all chemotherapy regimens are combination cocktails (e.g. R-CHOP, CMF, FOLFIRINOX, &c)

                                                                                                And as soon as a drug is shown to be very potent on its own (e.g. aPD1/aPDL1 checkpoint blockade) there's an explosion of trials looking to combine it with every possible other mechanism.

                                                                                                However, there is a strong desire to see drugs do something on their own before combining them with something else.

                                                                                                • tornato7 1 day ago

                                                                                                  I've been impressed by the "therapudic ecosystem" developed for coronavirus in the absence of a 'monotherapy'. The MATH+ treatment is an effective combination of available drugs and vitamins. I hope any future COVID drug is used alongside these options, instead of a "here's an expensive drug, now go home!" Approach that some treatments take.

                                                                                                  • copperx 1 day ago

                                                                                                    MATH+ seems to me like throwing everything and the kitchen sink into the disease, which screams “we don’t really know what we’re doing.” I haven’t seen replication efforts, and the doctor who’s peddling it once claimed to cure sepsis with IV vitamin C, an effort that failed to do much when replicated. It doesn’t look like a serious approach.

                                                                                                  • refurb 1 day ago

                                                                                                    Monotherapies? The big thing for cancer treatment in the last decade has been targeted combination therapies. The anti-PDLs are a great example (and have really improved outcomes) and they are mostly layered on top of existing treatments.

                                                                                                  • jitendrac 1 day ago

                                                                                                    As far as I know, Each cancer in a patient is mostly unique. Not all skin cancers or cancer tumor cases are same. they may have same underlying cause of it but not same cancer case. Mostly what treatment do is remove the affected tumor,tissues, if its related to blood plasma or bone-marrow transplant donor blood and bone marrow. Use chemo to weaken all cells of body regardless of its normal functioning or part of cancer. wait for human body to revive on its own immune system and repeat above task if needed.

                                                                                                    so, to fight the cancer first we must find a way to affordably find the type of cancer with cause case-by-case basis and develop a procedure for custom treatment and drug-delivery to affected part without disturbing whole body functions. From my perspective we are still way behind but in better position then yesterday or decade ago.

                                                                                                    • tyingq 1 day ago

                                                                                                      Absolutely true. There are many cancers where the only recourse is disfigurement, dangerous irridation, butchery, poison or death.

                                                                                                      No blame on current doctors and nurses, but our current understanding is brutal. Any real advances are crazy welcome.

                                                                                                    • dstick 1 day ago

                                                                                                      So if I summarize correctly they re-evaluated already “FDA passed” but abandoned substances for anti-cancer workings using new techniques (CRISPR) and got 50 hits. That’s amazing! Would this work in other fields as well?

                                                                                                      • iskander 1 day ago

                                                                                                        That's a good summary but it's missing the context that these kinds of "hits" will most likely fail clinical trials. Many drugs look good at this stage in preclinical development and almost none of them show both safety (ph1 trial) and efficacy (ph3 trial).

                                                                                                        There aren't actually that many low hanging therapeutic fruit out there, mostly we have to actually do the work to discover new mechanisms and make new compounds to target them.

                                                                                                        • dstick 1 day ago

                                                                                                          It read like that would be different here, using the new method, wouldn’t it? Or did I misunderstand that?

                                                                                                          • iskander 1 day ago

                                                                                                            The genes essential for cancer cells to grow in vitro could easily be quite different from those required to establish the tumor micro-environment, invade new tissues and fight off the immune system. They'll have many false negatives from the mismatch in context. Simultaneously, they might have false positives from e.g. differences in layout and density of tumor cells (2D/uniform vs. 3D heterogeneous tumor).

                                                                                                            And even if they get the right targets, finding drugs with an effective therapeutic index is hard.

                                                                                                            This might be a useful screening technique...but it's not the first high throughput screening method. They might have some successes, only trials will tell.

                                                                                                        • gumby 1 day ago

                                                                                                          There’s a specific regulatory pathway for this process, section 505(b)(2). It allows you to use the safety data for the approved treatments which can save you a lot of time and money (I have used this route for a drug myself T one of my companies).

                                                                                                          You still have to prove that your formulation is safe,of course, and prove efficacy for the situation you intend to market it for.

                                                                                                          • dstick 1 day ago

                                                                                                            Gotcha, and that makes sense. Seems like a big time saver regardless. Are we talking months or years, that are shaved off?

                                                                                                            • gumby 1 day ago

                                                                                                              Typically years. We had a program for a drug that caused bladder cancer in rats. The original mfr had spent a couple of years figuring out that it was specific to rats.

                                                                                                              I think the current stats are that the average drug time to approval is 14 years.

                                                                                                        • iskander 1 day ago

                                                                                                          Drug repurposing for cancer is a neat and vaguely plausible idea that's been eating up attention and grant funding for a decade now, without any successes in clinical trials.

                                                                                                          • TaupeRanger 1 day ago

                                                                                                            Precisely. The title is frankly appalling.

                                                                                                          • Gatsky 1 day ago

                                                                                                            Cancer is the most difficult health problem humans face. It will still be there long after we conquer neurodegeneration, atherosclerosis and diabetes. It is a major failure mode of all multicellular life. Dinosaurs got cancer. Every animal from mice to elephants gets cancer. It is startlingly common in humans. The cellular pathways altered in cancer existed before animals existed. It is an inescapable hangover from our evolutionary origins as unicellular organisms.

                                                                                                            The only way to beat cancer is to upgrade the human organism to design out anachronistic evolutionary trade offs and prevent cancer development. The way we treat cancer now - the slash, burn, poison, hunt paradigm - is inhumane, expensive, and of limited effectiveness.

                                                                                                            • tyingq 1 day ago

                                                                                                              Fair enough, but cancer is a broad term. There are still many cancers where the only treatment is basically poison, irridation and/or butchery/mutilation. Hopefully that improves soon.

                                                                                                              I'm guessing future history will reflect on how dark all of this was.

                                                                                                              • _nalply 23 hours ago

                                                                                                                My wife is getting FLOT chemotherapy. She also does:

                                                                                                                - cannabis

                                                                                                                - bromelain and acetylcysteine

                                                                                                                - the next two times longevity fasting mimicking during four days around a chemotherapy administration

                                                                                                                Cannabis is well known for its medical traits. Bromelain is a meat-digesting enzyme, and a study suggest to combine it with acetylcysteine to reduce the adenocarcinoma. Another study suggests that acetylcysteine protects from neuropathy, a chemotherapy side effect. Fasting is said to switch the body into an energy-saving mode, protecting from chemotherapy, too; something which the tumor cannot so that it experiences the full brunt of the chemotherapy. Longevity fasting mimicking is not fasting but a diet having the same effects as fasting, but I think this is still dangerous. I hope that my wife compensates by eating more when she does not have chemotherapy.

                                                                                                                Perhaps this is useful to others. Take care!

                                                                                                                • TaupeRanger 1 day ago

                                                                                                                  Frankly, the title is absolutely idiotic. This article describes a way of studying drugs that have already been approved by the FDA for other indications as potential cancer drugs. A vast majority of these drugs will fail or do no better than current treatments which involve butchery and poison. The article is basically worthless and I have no idea why it has even a single upvote from this community. None of this has been shown to do anything for patients.

                                                                                                                  • yesenadam 1 day ago

                                                                                                                    > The article is basically worthless and I have no idea why it has even a single upvote from this community.

                                                                                                                    People often upvote if the discussion is good. The discussion on this page was very good, I thought, very much worth reading - informative and touching. Thanks all, and good luck.

                                                                                                                  • racecar789 1 day ago

                                                                                                                    There is a firewall that exists between doctors and billing. Or maybe it's blissful ignorance. I have noticed doctors often have no idea what their tests and procedures will cost the patient.

                                                                                                                    Moreover, a doctor's vocal tone often changes when discussing cost. The tone changes from friendly/caring to annoyed/defensive.

                                                                                                                    I don't think the firewall can last forever.

                                                                                                                    • jimbokun 1 day ago

                                                                                                                      > I have noticed doctors often have no idea what their tests and procedures will cost the patient.

                                                                                                                      Maybe they don't know the amounts, but they are forced to know a lot about how the billing process works. For example, my company develops a product that helps doctors create documentation in a way that makes it more likely they will get reimbursed by insurance companies with the least amount of hassle and push back.

                                                                                                                      Also, they probably have no idea what it will cost you until the insurance company and hospital fight it out over the price.

                                                                                                                      > The tone changes from friendly/caring to annoyed/defensive.

                                                                                                                      Every doctor is triggered by having to deal with bureaucratic insurance and billing processes that consume their time and keep them from spending more time on treating patients. You are sensing their barely controlled rage at the system.

                                                                                                                      (This is all for the US system, probably not true in most other countries.)

                                                                                                                    • pps43 1 day ago

                                                                                                                      Yet there is no visible shift in cause of death distribution. Cancer is still up there, successfully competing with cardiovascular diseases for #1 spot.

                                                                                                                      • deeg 1 day ago

                                                                                                                        I don't think that's necessarily a knock against cancer treatments. In the end we all have to die of something and late-life cancer is probably always going to be a leader. I think a better stat would be the average age of those who die of cancer and the survival rates of child cancers.

                                                                                                                        • phendrenad2 1 day ago

                                                                                                                          Yeah I wish people would account for this when making statements. What is the incidence of cancer death in 50-year-olds then vs now.

                                                                                                                      • the-dude 1 day ago

                                                                                                                        I am instantly reminded of Lou Reed's "Magic and Loss".

                                                                                                                        Not easy to listen to the first few times. Learned to appreciate.

                                                                                                                        Much later on I lost a loved one to acute leukemia. At least there was no months long struggle.

                                                                                                                        • 29athrowaway 1 day ago

                                                                                                                          Fenbendazole, active ingredient in dog deworming medication, has shown some anti-cancer properties.


                                                                                                                          • codecamper 1 day ago

                                                                                                                            I'm sorry but re-purposing existing drugs does not sound promising at all.

                                                                                                                            Having computers that can fold the proteins and understand how molecules bind sounds like a much better shot. Figuring out how to do this with quantum computers to really really speed it up would be wonderful.

                                                                                                                            • ne01 1 day ago

                                                                                                                              There is a tendency to fight our way out of every problem. But what we truly need is to accept the problem, take responsibility and look for the root cause.

                                                                                                                              That is true “fighting”. But most try to destroy the symptoms so they can continue their path and usually continue the root cause.

                                                                                                                              Of course finding the root cause is not easy and it takes one to study oneself

                                                                                                                              I highly recommend the following book to everyone (including the “healthy”)

                                                                                                                              The 12 Stages of Healing: A Network Approach to Wholeness Book by Donald M. Epstein and Nathaniel Altman

                                                                                                                              • _jahh 1 day ago

                                                                                                                                while I'd be the last to say root approach should be discounted (diet, lack of exercise, smokes, and bad sleep contributing more to bad outcomes that just about anything else), I worry that the thinking in this post can be used to judge people who have cancer for their actions when unfortunately the true root cause for many people is actions taken long before they're born because of environmental exposure. So while yes most everyone could benefit from more self study some cancerous situations require vigorous assault on the symptoms, like death.

                                                                                                                                • dstick 1 day ago

                                                                                                                                  Agreed, and even then, doesn’t cancer “just happen”? There’s a BRCA2 gene defect in my family (that I’m lucky enough not to have inherited) and that increases the likelyhood of developing breast cancer to 80% for women and prostate cancer to ~20% for men. But to the best of my knowledge, everyone has an innate %, just by virtue of being alive.