[HN Gopher] We're a Lot Better at Fighting Cancer Than We Realized
___________________________________________________________________
We're a Lot Better at Fighting Cancer Than We Realized
Author : dnetesn
Score : 183 points
Date : 2020-08-01 15:57 UTC (7 hours ago)
(HTM) web link (cshl.nautil.us)
(TXT) w3m dump (cshl.nautil.us)
| [deleted]
| Gatsky wrote:
| 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.
| dstick wrote:
| 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 wrote:
| 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 wrote:
| It read like that would be different here, using the new
| method, wouldn't it? Or did I misunderstand that?
| gumby wrote:
| 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 wrote:
| Gotcha, and that makes sense. Seems like a big time saver
| regardless. Are we talking months or years, that are shaved
| off?
| tyingq wrote:
| 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.
| TaupeRanger wrote:
| 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.
| jitendrac wrote:
| 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 wrote:
| 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.
| [deleted]
| trynewideas wrote:
| 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.
| agumonkey wrote:
| 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 wrote:
| 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.
| dlumpkin wrote:
| 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.
| liveoneggs wrote:
| 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.
| ChefboyOG wrote:
| 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.
| romanoderoma wrote:
| 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 wrote:
| 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 wrote:
| 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.
| softwaredoug wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| 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.
| copperx wrote:
| I'm curious about what kind of cancer masquerades as iron
| deficiency, an infection, and a benign tumor?
| liveoneggs wrote:
| acute myeloid leukemia
| callmeal wrote:
| >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 wrote:
| 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.
| arcticbull wrote:
| "...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.
| Alex3917 wrote:
| > If they didn't, you could practice your own medicine.
|
| Which most people do.
| arcticbull wrote:
| 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 wrote:
| 75%+ of American adults take supplements, and that's just
| one of many different self-directed medical activities
| that people practice.
| arcticbull wrote:
| 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 wrote:
| > 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 wrote:
| 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.
| codecamper wrote:
| 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.
| libraryatnight wrote:
| 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 wrote:
| > 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/2018/10/1810231
| 10545.h...
| whatshisface wrote:
| 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.
| satyrnein wrote:
| 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 wrote:
| 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 wrote:
| 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.
| arcticbull wrote:
| Totally agree.
| adrian_b wrote:
| 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 wrote:
| 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...
| trynewideas wrote:
| 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 wrote:
| 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 wrote:
| > 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/
| bserge wrote:
| > 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 wrote:
| What do you mean? I'm from a country with universal
| healthcare, and you can just go see another doctor.
| namenotrequired wrote:
| He said _some_
| pilsetnieks wrote:
| 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 wrote:
| 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.
| raffraffraff wrote:
| 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 wrote:
| > 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.
| dboreham wrote:
| Long ago, I knew someone who had an undiagnosed brain tumor.
| Multiple Drs told her she was pregnant.
| rpmisms wrote:
| Yeah, the American free market system is expensive, but man,
| ~98% survival rate for breast cancer? That's extremely
| impressive.
| sangfroid_bio wrote:
| 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 if the admissions rate
| for computer science is 7%.
| twunde wrote:
| 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 wrote:
| 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.
| chiefalchemist wrote:
| 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.
| inspector-g wrote:
| 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 wrote:
| 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 wrote:
| 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:
|
| https://en.wikipedia.org/wiki/Capitation_(healthcare)
| ghufran_syed wrote:
| 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 wrote:
| This begs the question: Why are for-profits winning over
| Kaiser, Why isn't the Kaiser model everywhere ?
| twunde wrote:
| 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...
| tstrimple wrote:
| 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.
| kiba wrote:
| 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 wrote:
| 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.
| cmrdporcupine wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| 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.
| magicalhippo wrote:
| > 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 wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| 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.
| tornato7 wrote:
| 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.
| specialist wrote:
| Caveat emptor is the status quo, not the ideal.
| deergomoo wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| (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 $11 billion dollars by Gilead. [2] But of
| course quickly after others will follow. [3] This is why
| patents last 20 years.
|
| (5) "There has been good research on cancer treatements
| that do not destroy the immune system, nor require
| poisoning. A cursory scan on sci-hub for medicinal
| mushrooms and cancer yeild a hundred hits [0] with much
| to learn from. Studies from 20 years ago showing how
| taking certain mushrooms while undergoing chemo and/or
| radiation can greatly reduce side effects and improve
| survival rates."
|
| So does fasting, no mushrooms needed. [4] But in both
| your studies and mine it was the "poison" _chemotherapy_
| that was treating the cancer, not the mushrooms.
|
| [1] https://en.wikipedia.org/wiki/Spontaneous_remission
|
| [2] https://www.scientificamerican.com/article/we-now-
| have-the-c...
|
| [3] https://www.theguardian.com/science/2018/apr/12/non-
| profits-...
|
| [4] https://osher.ucsf.edu/patient-care/integrative-
| medicine-res...
| xenospn wrote:
| Just to add to your point - I think almost everyone reading
| this will have a story like this that they have either
| experienced firsthand, or had a relative/friend go through. I
| know I sure do.
| copperx wrote:
| Of course. 1/3 of the population will get cancer. It affects
| every person during their lifetime, directly or indirectly.
| Asooka wrote:
| I get the acute feeling that we're training medical doctors
| mainly in theory and giving them a very good understanding of
| human biology, but skipping the crucial step of training them
| to treat people. I myself had to see several professionals
| until figuring out my problems are mainly due to severe Vitamin
| D deficiency. A test that cost all of 30$ 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.
| jcims wrote:
| 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?'
| grecy wrote:
| 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.
| drocer88 wrote:
| 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 wrote:
| 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 wrote:
| 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 wrote:
| > 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.
| MrLeap wrote:
| 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 wrote:
| That doesn't mean that the system isn't dysfunctional. Merely
| that it's less dysfunctional than elsewhere.
| cmrdporcupine wrote:
| 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 wrote:
| 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 wrote:
| 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.
| DanBC wrote:
| > 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 wrote:
| 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 wrote:
| 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.
| arcticbull wrote:
| 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 wrote:
| 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 wrote:
| 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...
| simonebrunozzi wrote:
| 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 wrote:
| The SF medical system is unusually terrible.
|
| Source: I have a chronic condition, and have lived in quite a
| few places, including SF.
| the-dude wrote:
| 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.
| jcims wrote:
| 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 wrote:
| 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.
| refurb wrote:
| 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.
| tornato7 wrote:
| 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 wrote:
| 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.
| 29athrowaway wrote:
| Fenbendazole, active ingredient in dog deworming medication, has
| shown some anti-cancer properties.
|
| https://www.nature.com/articles/s41598-018-30158-6
| codecamper wrote:
| 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.
| racecar789 wrote:
| 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 wrote:
| > 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.)
| iskander wrote:
| 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 wrote:
| Precisely. The title is frankly appalling.
| ne01 wrote:
| 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 wrote:
| 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 wrote:
| 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.
| [deleted]
| pps43 wrote:
| 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 wrote:
| 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 wrote:
| 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.
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