10 ms·

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 fight

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.

drocer88 6y 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-survival-rates-by-country https://worldpopulationreview.com/country-rankings/cancer-su... .
- izacus 6y 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 6y 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 6y 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.
- donatzsky 6y ago
  That doesn't mean that the system isn't dysfunctional. Merely that it's less dysfunctional than elsewhere.
  - b34r 6y 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.
  - cmrdporcupine 6y 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 6y 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-gawande 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.
- DanBC 6y 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.
- MrLeap 6y 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.
cmrdporcupine 6y 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 6y 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 6y 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.
voisin 6y 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.
xenospn 6y 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 6y ago
  Of course. 1/3 of the population will get cancer. It affects every person during their lifetime, directly or indirectly.
jcims 6y 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?‘
agumonkey 6y 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 6y 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 6y 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;
copperx 6y ago
I'm curious about what kind of cancer masquerades as iron deficiency, an infection, and a benign tumor?
- callmeal 6y 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.
  - chromatin 6y 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.
    - callmeal 6y ago
      I don't know if you're being straight or that was sarcasm. In any case, here's some links for you: [0] https://www.bbc.com/future/article/20180518-the-inequality-in-how-women-are-treated-for-pain https://www.bbc.com/future/article/20180518-the-inequality-i... [1] https://www.nytimes.com/2018/05/03/well/live/when-doctors-downplay-womens-health-concerns.html https://www.nytimes.com/2018/05/03/well/live/when-doctors-do... [2] https://www.healthline.com/health/mental-health/doctors-gaslighting-patients#1 https://www.healthline.com/health/mental-health/doctors-gasl... [3] https://www.vice.com/en_us/article/qvedxd/doctors-dont-always-believe-you-when-youre-a-black-woman https://www.vice.com/en_us/article/qvedxd/doctors-dont-alway...
  - arcticbull 6y 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.
chiefalchemist 6y ago
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 6y 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 6y 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 6y 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 6y 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 http://gen.lib.rus.ec/scimag/?q=mushroom%20cancer
inspector-g 6y 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.
- sacred_numbers 6y ago
  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.
  - ghufran_syed 6y 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.
    - petra 6y ago
      This begs the question: Why are for-profits winning over Kaiser, Why isn't the Kaiser model everywhere ?
liveoneggs 6y 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.
softwaredoug 6y 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 6y 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 6y 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 6y 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.
dlumpkin 6y 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.
bserge 6y 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.
- xenospn 6y ago
  What do you mean? I'm from a country with universal healthcare, and you can just go see another doctor.
  - namenotrequired 6y ago
    He said some
    - pilsetnieks 6y 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 6y 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.
Asooka 6y 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.
twunde 6y 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 6y 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 6y ago
    Actually for anyone who finds themselves in a situation like this: https://www.reddit.com/r/personalfinance/comments/b01179/some_helpful_information_regarding_medical/ 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
seebetter 6y 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 6y 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 6y 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.
simonebrunozzi 6y ago
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 6y ago
  The SF medical system is unusually terrible. Source: I have a chronic condition, and have lived in quite a few places, including SF.
romanoderoma 6y 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 6y 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.
  - alecthomas 6y 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.
  - romanoderoma 6y 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.
grecy 6y 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.
ChefboyOG 6y 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.
magicalhippo 6y 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.

drocer88 6y 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-survival-rates-by-country https://worldpopulationreview.com/country-rankings/cancer-su... .

izacus 6y 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 6y 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 6y 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.
donatzsky 6y ago
That doesn't mean that the system isn't dysfunctional. Merely that it's less dysfunctional than elsewhere.
- b34r 6y 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.
- cmrdporcupine 6y 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 6y 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-gawande 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.
DanBC 6y 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.
MrLeap 6y 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.

cmrdporcupine 6y 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 6y 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 6y 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.

voisin 6y 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.

xenospn 6y 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 6y ago
Of course. 1/3 of the population will get cancer. It affects every person during their lifetime, directly or indirectly.

jcims 6y 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?‘

agumonkey 6y 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 6y 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 6y 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;

copperx 6y ago

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

callmeal 6y 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.
- chromatin 6y 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.
  - callmeal 6y ago
    I don't know if you're being straight or that was sarcasm. In any case, here's some links for you: [0] https://www.bbc.com/future/article/20180518-the-inequality-in-how-women-are-treated-for-pain https://www.bbc.com/future/article/20180518-the-inequality-i... [1] https://www.nytimes.com/2018/05/03/well/live/when-doctors-downplay-womens-health-concerns.html https://www.nytimes.com/2018/05/03/well/live/when-doctors-do... [2] https://www.healthline.com/health/mental-health/doctors-gaslighting-patients#1 https://www.healthline.com/health/mental-health/doctors-gasl... [3] https://www.vice.com/en_us/article/qvedxd/doctors-dont-always-believe-you-when-youre-a-black-woman https://www.vice.com/en_us/article/qvedxd/doctors-dont-alway...
- arcticbull 6y 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.

chiefalchemist 6y ago

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 6y 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 6y 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 6y 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 6y 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 http://gen.lib.rus.ec/scimag/?q=mushroom%20cancer

inspector-g 6y 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.

sacred_numbers 6y ago
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.
- ghufran_syed 6y 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.
  - petra 6y ago
    This begs the question: Why are for-profits winning over Kaiser, Why isn't the Kaiser model everywhere ?

liveoneggs 6y 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.

softwaredoug 6y 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 6y 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 6y 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 6y 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.

dlumpkin 6y 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.

bserge 6y 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.

xenospn 6y ago
What do you mean? I'm from a country with universal healthcare, and you can just go see another doctor.
- namenotrequired 6y ago
  He said some
  - pilsetnieks 6y 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 6y 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.

Asooka 6y 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.

twunde 6y 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 6y 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 6y ago
  Actually for anyone who finds themselves in a situation like this: https://www.reddit.com/r/personalfinance/comments/b01179/some_helpful_information_regarding_medical/ 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

seebetter 6y 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 6y 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 6y 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.

simonebrunozzi 6y ago

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 6y ago
The SF medical system is unusually terrible. Source: I have a chronic condition, and have lived in quite a few places, including SF.

romanoderoma 6y 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 6y 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.
- alecthomas 6y 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.
- romanoderoma 6y 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.

grecy 6y 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.

ChefboyOG 6y 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.

magicalhippo 6y 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.