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trynewideas
cmrdporcupine
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
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
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.
bserge
> a cancer that had been misdiagnosed as an infection, an iron deficiency, and a benign tumor for four months prior
It's absolutely maddening that this is not even uncommon. Doctors think they know best, definitely better than you, and will stand by their sometimes quite obviously idiotic conclusions, leaving you helpless. And in some countries with universal healthcare, it's a lot harder to just go find a better doctor. Screw the whole system. I've got more words to say, but I'll stop here.
I am sorry for what you're going through and wish you all the best.
rpmisms
Yeah, the American free market system is expensive, but man, ~98% survival rate for breast cancer? That's extremely impressive.
dboreham
Long ago, I knew someone who had an undiagnosed brain tumor. Multiple Drs told her she was pregnant.
sangfroid_bio
I have mentioned this before, this is a supply problem. If you do not gatekeep medical degrees with irrelevant non-academic barriers (volunteering, portfolios, admission letters) and mandate medical schools budgets to keep up with new demand, then there would be plenty of doctors and diversity of thought. Let the MCAT standardized test be the only signal for admissions and force the acceptance of medical accreditation based solely on technical competence. Medicine has a scale problem and nobody is trying to tackle it. The American Medical Association recently pulled their collaboration with Khan Academy to further keep up the barriers. At the end of the day, regardless of the complaints of big companies trying to seek "cheaper workers", software engineering as a field is still much more meritocratic than others. Attempts at unionisation and accreditation instead of leetcoding (kicking the ladder hmm?) has all gone absolutely nowhere. Be vigilant about attempts to gatekeep. For too long MBA and public policy institutions spewed the drivel that non-free-access accreditation is the end-all be-all, of the idea that if you do not genuflect before various admissions committees of expensive professional degree schools you do not have the right to take the accreditation exam, that you are a threat to public safety. Imagine where the world would be if the average admissions rate for computer science was 7%.
xenospn
What do you mean? I'm from a country with universal healthcare, and you can just go see another doctor.
raffraffraff
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.
namenotrequired
He said some
inspector-g
The last bit of your comment, regarding misdiagnosis, reminds me of a recent episode of Peter Attia’s podcast The Drive, wherein he interviews an experienced oncologist. Her opinion was strong in that we are overspending in treatment research and underspending in (early) diagnosis research. Her case, as described in the interview, made sense to me and gave me some hope that at least others could benefit in the future from such spending adjustments. But, I am sorry for what you’re going through, and that such a change has not yet taken place from which you/your partner would have benefitted.
petra
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.
sacred_numbers
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
If they diagnose more illnesses, wouldn't that also lead to more spent on treatments and higher reimbursements?
Or do you mean if it's "caught early" the treatments might be cheaper and so less overall reimbursements?
For the latter case, moving to a capitation model can't come soon enough:
ghufran_syed
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.
dlumpkin
When my partner was 23 they were diagnosed with a recurrence of lymphoma. We went through almost six months of chemotherapy, radiation, a bone marrow transplant, and months in the hospital. All the while I was constantly fighting our "good" insurance for approvals and paying tens of thousands out of pocket. It was the worst season in both of our lives.
But today we are actually celebrating our anniversary, and my partner has been in remission for nine years. I hope you find some peace today and know that you are not alone.
softwaredoug
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
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
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
Pancreatic cancer is a really, really hard cancer to treat due to the way it tends to wall itself off from the rest of the body. It is near impossible to get any drug to the cancer.
agumonkey
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
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
I get your point, and it's highly plausible .. but he was the head of the highest oncology facility in the country so I don't think he's looking for numbers. Now this is an interesting topic.. every year journals list the top 100 hospitals. It would be "fun" if the best ones are the one who picks the most favorable patients u_u;
twunde
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
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
Actually for anyone who finds themselves in a situation like this: https://www.reddit.com/r/personalfinance/comments/b01179/som... has some great advice. And if you work for a tech company, many are able to really help you (since most tech companies skew young and healthy, ie low-risk, they are able to really push on the insurance companies). I know of at least one case at AppNexus a few years ago
jcims
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?‘
jcims
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
Re: monotherapies. This hasn't been my experience.
Almost all chemotherapy regimens are combination cocktails (e.g. R-CHOP, CMF, FOLFIRINOX, &c)
And as soon as a drug is shown to be very potent on its own (e.g. aPD1/aPDL1 checkpoint blockade) there's an explosion of trials looking to combine it with every possible other mechanism.
However, there is a strong desire to see drugs do something on their own before combining them with something else.
tornato7
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
MATH+ seems to me like throwing everything and the kitchen sink into the disease, which screams “we don’t really know what we’re doing.” I haven’t seen replication efforts, and the doctor who’s peddling it once claimed to cure sepsis with IV vitamin C, an effort that failed to do much when replicated. It doesn’t look like a serious approach.
refurb
Monotherapies? The big thing for cancer treatment in the last decade has been targeted combination therapies. The anti-PDLs are a great example (and have really improved outcomes) and they are mostly layered on top of existing treatments.
jitendrac
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
Absolutely true. There are many cancers where the only recourse is disfigurement, dangerous irridation, butchery, poison or death.
No blame on current doctors and nurses, but our current understanding is brutal. Any real advances are crazy welcome.
dstick
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
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
It read like that would be different here, using the new method, wouldn’t it? Or did I misunderstand that?
iskander
The genes essential for cancer cells to grow in vitro could easily be quite different from those required to establish the tumor micro-environment, invade new tissues and fight off the immune system. They'll have many false negatives from the mismatch in context. Simultaneously, they might have false positives from e.g. differences in layout and density of tumor cells (2D/uniform vs. 3D heterogeneous tumor).
And even if they get the right targets, finding drugs with an effective therapeutic index is hard.
This might be a useful screening technique...but it's not the first high throughput screening method. They might have some successes, only trials will tell.
gumby
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
Gotcha, and that makes sense. Seems like a big time saver regardless. Are we talking months or years, that are shaved off?
gumby
Typically years. We had a program for a drug that caused bladder cancer in rats. The original mfr had spent a couple of years figuring out that it was specific to rats.
I think the current stats are that the average drug time to approval is 14 years.
iskander
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
Precisely. The title is frankly appalling.
Gatsky
Cancer is the most difficult health problem humans face. It will still be there long after we conquer neurodegeneration, atherosclerosis and diabetes. It is a major failure mode of all multicellular life. Dinosaurs got cancer. Every animal from mice to elephants gets cancer. It is startlingly common in humans. The cellular pathways altered in cancer existed before animals existed. It is an inescapable hangover from our evolutionary origins as unicellular organisms.
The only way to beat cancer is to upgrade the human organism to design out anachronistic evolutionary trade offs and prevent cancer development. The way we treat cancer now - the slash, burn, poison, hunt paradigm - is inhumane, expensive, and of limited effectiveness.
tyingq
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
Frankly, the title is absolutely idiotic. This article describes a way of studying drugs that have already been approved by the FDA for other indications as potential cancer drugs. A vast majority of these drugs will fail or do no better than current treatments which involve butchery and poison. The article is basically worthless and I have no idea why it has even a single upvote from this community. None of this has been shown to do anything for patients.
yesenadam
> The article is basically worthless and I have no idea why it has even a single upvote from this community.
People often upvote if the discussion is good. The discussion on this page was very good, I thought, very much worth reading - informative and touching. Thanks all, and good luck.
racecar789
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
> 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.)
_nalply
My wife is getting FLOT chemotherapy. She also does:
- cannabis
- bromelain and acetylcysteine
- the next two times longevity fasting mimicking during four days around a chemotherapy administration
Cannabis is well known for its medical traits. Bromelain is a meat-digesting enzyme, and a study suggest to combine it with acetylcysteine to reduce the adenocarcinoma. Another study suggests that acetylcysteine protects from neuropathy, a chemotherapy side effect. Fasting is said to switch the body into an energy-saving mode, protecting from chemotherapy, too; something which the tumor cannot so that it experiences the full brunt of the chemotherapy. Longevity fasting mimicking is not fasting but a diet having the same effects as fasting, but I think this is still dangerous. I hope that my wife compensates by eating more when she does not have chemotherapy.
Perhaps this is useful to others. Take care!
pps43
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
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
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.
undefined
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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.