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We’re a Lot Better at Fighting Cancer Than We Realized

cshl.nautil.us

71–80 of 142 posts

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#71
post #31

Earlier quoted context omitted.

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 f…

> 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. M…

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.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#72

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 rela…

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.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#73

Earlier quoted context omitted.

>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.

"...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 practic…

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.

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Re: We’re a Lot Better at Fighting Cancer Than We Realized

#74

Earlier quoted context omitted.

"...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 practic…

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 a…

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...

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#75
post #50
post #45

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

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.

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.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#76

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 rela…

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) a…

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".

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#77

Earlier quoted context omitted.

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

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 w…

> 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.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#78

Earlier quoted context omitted.

>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.

"...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 practic…

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.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#79
post #16

Earlier quoted context omitted.

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

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…

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.

Re: We’re a Lot Better at Fighting Cancer Than We Realized

#80

Earlier quoted context omitted.

"...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 practic…

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.

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...

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