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.
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.
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".
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.
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.
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.
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.
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.
It’s almost impossible to have a real conversation about socialized medicine here without encountering a myriad talking points like that one.
And our healthcare system is considered very good, and uses Single payer, etc.
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:
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) . 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)
I think both a strength and weakness of KP is that it is not really one organization, but more like 20+ related legal entities. Each region has their own med group/health plan with some regions having their own hospital foundation (some like Georgia do not own hospitals). This means that a lot of work/decision making is extremely siloed and KP National has limited ability to lay down the law. Different Regions and even just medgroup vs health plan within one region often don’t want to share data. Also, KP’s ehr is not cross-region compatible.
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.
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
Hard to digest.
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?
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)
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.
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.
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.
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.
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.
The future is here, but unfortunately not evenly distributed.
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.
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?
That would seem to be a reasonable assumption, but you must not like vaccines if you think that way, Karen.
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
I think it's unfair and harsh that life or death are in the hands of private held companies that profit from people desperation.
> The doctors and nurses care tremendously and want to help everyone
But US as a society doesn't.
As an Italian I am heavily taxed just so everyone can benefit from free universal healthcare, regardless of the amount of care doctors and nurses put in their work.
In US people simply don't want to do it.
It's a fact, not a judgement.
To have access to medical attention not having to worry about your finances is much more important than relying of the goodwill of those who work in the healthcare system (and BTW my parents worked for the Italian healthcare their whole life, so I believe you when you say that medical personnel do care).
If sharing is caring, not wanting to share the tremendous amount of wealth produced in exchange for something that would greatly improve the life conditions of large segments of the population, what is?
US has the highest healthchare spending per capita in the World, but the lowest life expectancy of the entire west.
I think this is more to do with diet and drug addiction that the health care system
drug addictions and diets in Italy are handled by the health care system.
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.
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.
Source: I have a chronic condition, and have lived in quite a few places, including SF.
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.
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.
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  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.
The kind of cancer where the patient can be easily dismissed by the doctor because of course they know best.
"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."  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." 
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.
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  and this leads to antibiotic resistance . 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?  How about side-effects and contra-indications? What if you have something else entirely?
I've had nothing but bad experience. Complete crap on every count.
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.
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. 
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.
Which most people do.
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.  As it should be!
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 .
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  with a more pronounced effect in smokers .
So, I re-iterate, there's a reason these people went to school to become doctors.
My point was that the majority of American adults practice their own medicine, which is factually correct.
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.
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.
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.
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  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.
(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.  But of course quickly after others will follow.  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  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.  But in both your studies and mine it was the "poison" chemotherapy that was treating the cancer, not the mushrooms.
The really ingenious work being done these days is finding ways to point our immune system at cancer and letting it do the hard work for us.
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.
 https://worldpopulationreview.com/country-rankings/cancer-su... .
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.
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
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.
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.
Though I now wonder if there is a larger difference for prostate cancer than other cancer types. It's commonly believed by cancer researchers that, if they autopsied everyone, they would find a prostate tumor in most men over 65.
There are also the "fact boxes" and "icon arrays" on this site: https://www.hardingcenter.de/en/early-detection-prostate-can...
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.
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.
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.
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.
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.
No blame on current doctors and nurses, but our current understanding is brutal. Any real advances are crazy welcome.
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.
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.
You still have to prove that your formulation is safe,of course, and prove efficacy for the situation you intend to market it for.
I think the current stats are that the average drug time to approval is 14 years.
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.
I'm guessing future history will reflect on how dark all of this was.
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.
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.
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.)
- 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!
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.
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.
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