8 ms·

The cancer that some doctors don't want to call cancer

80 points by isaacfrond 3y ago

haspoken 3y ago
https://archive.is/xfZdx https://archive.is/xfZdx
fortran77 3y ago
> Renaming the lowest-risk prostate cancer would cut down on overly aggressive treatment, some doctors say I'm very skeptical. My father died from metasticized prostate cancer, and I'm now showing elevated PSA, though needle biopsy and MRI found no cancer. It's true that prostate cancer is slow-growing, and it affects older men. So the theory is most men die of something else and it's not worth aggressive treatments. That may be true--but there's no reason not to call a cancer "cancer." 65% of men are obese or overweight. So it follows that an obese 70 year old--and the majority of men--who are diagnosed with prostate cancer may die of something else first. But it would be wrong--and unfair--if right-sized people were denied or discouraged from aggressive treatment because the population as a whole had other health issues.
- Ma8ee 3y ago
  (I didn’t read the article due to paywall). The reason they are reluctant to aggressive treatment is because risk of side effects that affect quality of life, such as impotence and incontinence. Do you want to wear a diaper for the rest of your life or live with a relatively low risk of earlier death from cancer?
  - s1artibartfast 3y ago
    FYI, It seems like you are agreeing with the parent post, but your tone comes off pretty hostile. What point are you trying to make?
    - Ma8ee 3y ago
      My point is that it isn't population considerations that make physicians reluctant to treat many cases of prostate cancer, but balancing relatively low risks of the cancer being aggressive against quite severe quality of life degradation for the individual patients. I really don't see how my post would be considered hostile.
      - jrpt 3y ago
        The vast majority of radical prostatectomies don’t have incontinence (like 95%), and impotence isn’t common either. Furthermore, they’re usually in older men who are already impotent. Many years ago incontinence was a side effect but it isn’t common any longer as surgery has gotten better. The story of how they discovered the nerves they were cutting that causes impotence is kind of crazy, because for years it is basically like nobody even looked into it. Then one day someone decided to and they figured it out pretty quickly. That was in 1982.
        Ma8ee 3y ago
        I don’t have time to dig out some definitive study, but top google results list incontinence as a “common” side effect.
        jrpt 3y ago
        I’m talking about long-term incontinence which is what people are most concerned about. You probably are reading about short-term incontinence. If you are having a radical prostatectomy done, you probably are hoping to live at least ten more years or even longer, so you’re basically saying you want short-term pain (surgery, pain, incontinence, etc) for long-term peace of mind (no metastases).
        Sebb767 3y ago
        1 in 10 is the usual order of magnitude for side effects labelled "common", so this doesn't disagree with the 90% number at all.
      - 3y ago
  - fortran77 3y ago
    I would happily wear a diaper in my 70 and 80s if I was in good health otherwise.
    - petesoper 3y ago
      There is a solution for chronic cases like this: a manually operated valve that stands in for the sphincter. Some of the guys in my prostate cancer support group have described this as "life changing".
      - fortran77 3y ago
        Yes! Also, most people will dribble a bit when they get old no matter what--with or without prostate cancer. I'm much more concerned about my mental health than having to wear incontinence pads in my 80s.
- s1artibartfast 3y ago
  >But it would be wrong--and unfair--if right-sized people were denied or discouraged from aggressive treatment because the population as a whole had other health issues. I agree. Public health professionals should not engage in deceit in the name of the public good. Utilitarian arguments may rationalize net benefit on average, but that comes with winners and losers. The goal should be clarity of communication, even if it is sub-optimal.
  - tptacek 3y ago
    Is cervical dysplasia a deceptive term? CIN 3 dysplasia seems pretty close conceptually to grade 1 prostate cancer. There are doctors on HN, maybe one of them will set the record straight. This doesn't seem like one of those things where public health officials are trying to mind control the public with terminology. There are precancerous neoplastic illnesses, and cancer is defined by the threat of metastasis, which is sort of exactly what you don't have with grade 1 prostate "cancer".
- sebtron 3y ago
  Sorry for the nitpick, but that 65% number looked very high, so I checked and it is more like 40% according to what I found [1]. [1] https://www.who.int/news-room/fact-sheets/detail/obesity-and-overweight https://www.who.int/news-room/fact-sheets/detail/obesity-and...
  - atdrummond 3y ago
    Likely difference between international and U.S. numbers.
  - greenhexagon 3y ago
    OP said "65% of men are obese or overweight" but your source is only obese. CDC says 73.6% of adults are overweight or obese (https://www.cdc.gov/nchs/fastats/obesity-overweight.htm https://www.cdc.gov/nchs/fastats/obesity-overweight.htm)
    - sebtron 3y ago
      No, my source says overweight (which includes obese). Your source is for the US only.
- sroussey 3y ago
  For when it metastasizes, aggressive treatment is to get rid of every trace of testosterone in your system. Prostate cells are regulated by it, so removing it is pretty effective… for a while…
  - Auracle 3y ago
    As someone who suffered awfully low testosterone for years due to a brain injury (but still not 0), that sounds awful.
    - imtringued 3y ago
      15 years of suffering chemotherapy to get a statistically insignificant extension of your life span? It's a steal according to HN.
- i_cannot_hack 3y ago
  Your analysis is contradicted by the evidence presented in the article. > One study took 1,600 men with low-risk prostate cancer in the U.K. and randomly assigned them to get surgery, radiation or active surveillance. Fifteen years later, the researchers found that mortality rates for all the men were low, and similar for each group no matter which approach they took, according to the study which was published last year in the New England Journal of Medicine. If aggressive treatment regularly saved lives the healthiest 35% of the population, one would probably see a noticeable difference in mortality between the randomized groups. Maybe it would be possible to find flaws in the study, or an interpretation of the results that would align with your analysis, but it seems like you haven't engaged with the evidence at all.
  - Someone 3y ago
    > If aggressive treatment regularly saved lives the healthiest 35% of the population, one would probably see a noticeable difference in mortality between the randomized groups. It isn’t different from no treatment according to that statistic, but it does save lives. Unfortunately, it also kills about the same number of men. It also, for thousands, decreases quality of life. Unnecessary operations can have side effects and there are scares on early false positives. Even the visits for checkups decrease quality of life a bit, and you’ve to do millions of those to save a life. The problem is that, once the word ‘cancer’ has fallen, people categorize dying and side effects such as erectile dysfunction as the cancer’s fault and surviving as being thanks to medicine. So, on parties, they’ll say “doctors saved my life” and “cancer killed my brother”
- jdietrich 3y ago
  >But it would be wrong--and unfair--if right-sized people were denied or discouraged from aggressive treatment because the population as a whole had other health issues. Everyone should be discouraged from choosing treatment that does more harm than good, which (unfortunately) is practically the norm for cancer treatment in the US. If a treatment is described as "aggressive", it is usually inappropriate - aggression is rarely motivated by a thoughtful and careful consideration of the facts. The fear of cancer is wholly understandable, but it often leads to avoidable harm. We're very good at identifying tumours and suspicious cells, but we're very bad at predicting which of those will actually develop into serious disease. As a result, far too many patients are being subjected to painful and risky treatments with life-altering side-effects for no clear clinical benefit. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4322920/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4322920/
- refurb 3y ago
  But that’s how public healthcare works. You create a system based on population level evidence. If regular mammograms don’t reduce cancer deaths, then you don’t pay for them. That might be some people get diagnosed later, have to undergo more aggressive treatment, but that added cost is more than offset by not paying for mammograms for the entire population. Works great at the population level, but at the individual level it may mean some people “slip through the cracks”.
  - fortran77 3y ago
    I don't disagree! But perhaps they should have two sets of "actuarial tables" -- one for the overweight/obese majority, and one for the right-sized miniority. When ever I see a study that doesn't talk about the "elephant in the room" I don't trust it. There's a prostate cancer treatment algorithm that the Mayo Clinic uses that separates obese people from healthy-weight people. I trust that.
strogonoff 3y ago
TL;DR Doctors consider renaming low-risk prostate cancer to something else, because calling it “cancer” prompts aggressive treatment that doesn’t improve the outcomes. Since other low-risk cancers were already renamed, it does not seem controversial. Perhaps a more correct way forward is to stop assuming cancer = death, but that seems unlikely. I wonder if the stress from knowing you have cancer contributes to stress, inflammation, and as a result worsens the illness or makes it less likely to resolve.
- beAbU 3y ago
  It's only years later, well into my adult life, that I learned that "melanoma" was actually skin cancer. I always thought it was just a nasty mole. Various members in my family and circle has had a melanoma, my father had two in the last 10 years. It was only when a friend of mine was diagnosed very late, after the damn thing spread to his lymph system when I realized "holy shit this is actually cancer". Another friend had a "cancer scare" and broke contact with all of us for months while she was dealing with the trauma and anxiety. Only much later did we learn she had a /possible/ melanoma. Most of us were kind of baffled by the reaction. It's interesting how naming scary things sometimes greatly contributes to the actual scare-factor of the thing. Where if it's unnamed, or receives a benign name, then most ignore it.
  - tptacek 3y ago
    Melanoma is the scariest kind of skin cancer, for what it's worth; it's a term that technically should scare you more than "skin cancer".
    - dehrmann 3y ago
      It's certainly scary, but it's on the skin, so it's easy to spot, and when spotted early, it's easily cured. Lots of qualifiers there, so check those moles.
    - Sebb767 3y ago
      > it's a term that technically should scare you more than "skin cancer". For the unitiated: Why?
throwaway20222 3y ago
When my wife was diagnosed with thyroid cancer our doctor said the same thing was being discussed about reclassifying her diagnosis as well. His assertion was that a lot of thyroid cancers aren’t even discovered until post mortem from another cause of death. Also that the standard treatments are so effective, and in some ways unique to thyroid cancer (radioactive iodine treatment specifically) that the cure rate was very high. This was a decade ago and while I remember reading up on it at the time, I don’t have any primary research to back this up so take it with a grain of salt.
- BeetleB 3y ago
  > I don’t have any primary research to back this up so take it with a grain of salt. Iodized?
- colordrops 3y ago
  Depends on how advanced. I had a relatively fast growing papillary thyroid cancer that was already 3cm and spread to my lymph nodes. Still relatively "easy" to address, and I've been in remission for 10 years, but if my thyroid was not removed, and I didn't take the radiation treatment, I probably would have been toast long ago.
puchatek 3y ago
I would like to know whose stands to benefit from this the most. Is it about improving quality of life for patients? Or to save costs for health insurers who won't have to pay for treatment of the side effects of the more aggressive options?
- TylerE 3y ago
  The former. Something like 75% of men in their 80s probably have some sort of mild prostate cancer. It’s just extremely prevalent but most of the time they are rather non-aggressive so you will die of something else years before you’d even think of worrying about the cancer killing you.
- eru 3y ago
  In a competitive market, insurers don't really care one way or another whether something should be covered or not: they just adjust premiums accordingly. (Ideally, as a customer you'd have a choice between plans that do and do not cover a particular treatment.)
- epistasis 3y ago
  Insurers are incentivized to set standards for spending as much money as possible on all health care. They have maximum profit rates, as a percentage of revenue. So the two ways to grow the revenue, and therefore profit, are to 1) capture a larger percentage of patients, and 2) make sure that all patients, including competitors, start using more expensive care options all together. System-wide cost savings do not increase insurance company profits. This could be considered a good thing or a bad thing, depending on your point of view, I guess. I had always considered it a bad thing, but given the thrust of your comment, perhaps it's good that there's no incentive for health care companies to push cost-savings measures as an industry.
  - imtringued 3y ago
    And this is why having government funded basic healthcare isn't as inefficient as so many people claim. For the government the only thing that matters is net tax revenue. Healthy people pay more taxes and unhealthy people cost money. So the solution is obvious: invest in effective low cost preventative treatments and cures. That maximizes net tax revenue. Meanwhile private insurers only care about your health to the extent that they get paid. Healthy people bring in less money than the chronically ill.
pintxo 3y ago
One big problem today is, that professionals have voted to reduce screening because of the side-effects of treatment. Especially on those, non-threatening, low risk cancers, which would (likely) never have posted a risk. If removing the cancer label on those, and thus remove most of the useless treatment, this would be a net positive for all men. As we could start to role out society-wide screening. And really catch the problematic cases. Like men in their 40s or 50s getting prostate cancer. Today we have voted (in most western countries) to not screen at all because the cost (in human suffering, not money, although that’s surely also a problem) of over-treatment is higher than the cost for those who die early because their cancer wasn’t found early enough. Which basically means we let people die, because we are not able to manage low risk cancer cases correctly. Source: I’ve once been the tech part of a prostate cancer patient network startup for seven years. Turns out it’s hard to make it cash positive.
- glonq 3y ago
  Can confirm. Due to late/lazy screening, my cancer was caught late and now I'm fighting an uphill battle. It doesn't seem like rocket science to screen early but also not over-treat.
  - meepmorp 3y ago
    I hope you win your battle.
  - tetramer 3y ago
    Hey friend, I'm so sorry you're going through that and I wish you the best of luck in your journey. I would argue though that it's not rocket science...currently, it's a lot harder with many more unknowns. Some of the issues we face are: - Imperfect screening tests: the (very real) risk of both false positives and false negatives - Lack of great prognostic models: if we think a certain cancer has a 25% chance of metastasizing within 5 years and I have 4 patients in front of me, how do I know which is the one? - How do we identify if we're actually changing the trajectory of cancer with certain treatments? If a treatment fails, is it because we didn't choose the right treatment or is it reflective of underlying aggressive disease biology? - Mass amounts of data from new technologies: this is obviously great and has allowed us to become granular with cancer in a way we haven't been able to before. It's important to recognize that widespread next generation sequencing is something we've had for less than a decade, and we have identified a lot of risk factors with this BUT it's also raised many questions (e.g. what mutations are actually significant?). - Being human: every individual has their own values. Some patients will hear that it's a 1% chance this will become cancer and be okay with monitoring it. Some patients hear 1% and think it's too much of a risk and want intervention. I think, with time and more data, we will become a lot better at this. But it's really not easy.
tetramer 3y ago
The general public definitely doesn't have a great understanding of the word "cancer." Patients often don't know that prostate cancer is not the same as lung cancer is not the same as colon cancer, etc. And unfortunately, cancer is a lot more nuanced than that with a lot of heterogeneity even within a cancer type, e.g. an 80 year old male incidentally found to have an elevated PSA and subsequent low grade prostate cancer has a biologically different disease than a 35 year old who comes in with de novo metastatic prostate cancer. I wish we had better ways of predicting what a patient's life will look 1 or 5 or 10 years down the line. We're developing the tools to do that, but there is still a significant amount of uncertainty and we can't eliminate that anxiety for patients. I don't know if re-naming low risk prostate cancer will do that either, but I can't say I feel strongly about it one way or another. I hope that the population starts to get a better understanding of what "cancer" really is (i.e. a very wide spectrum of diseases), the inherent uncertainty associated with the diagnosis, and that we continue to get better predictive tools in the meantime.
verisimi 3y ago
Cancer is a brand name tm. It makes people do stuff, get treatment etc. The brand is beneficial to the medical system, which about managing disease for profit, rather than making people well.
- piva00 3y ago
  > The brand is beneficial to the medical system, which about managing disease for profit, rather than making people well. This is a very American point of view, other places in the world do not have this issue but cancer is still a serious disease. Not every disease is an invention of the for-profit medical system of the USA.
deleted 3y ago
[deleted]
bayouborne 3y ago
Intel's Andy Grove in the mid '90s was particularly candid about his experiences and I think his willingness to discuss his experiences with the then state of the art advanced the public discussion in a healthy way. https://fortune.com/1996/05/13/andy-grove-prostate-cancer-cover-story/ https://fortune.com/1996/05/13/andy-grove-prostate-cancer-co... https://www.forbes.com/forbes/2008/0128/070.html https://www.forbes.com/forbes/2008/0128/070.html
duffpkg 3y ago
Wrote Hacking Healthcare, managed hospital systems, blah, blah... I remember first learning about cancer treatment and encology in detail when we took over management of a health system with a large set of encology centers. It was very eye opening to understand that one word, "cancer", is really an inappropriate blanket term for hundreds of more or less distinct diseases. Yes, they share a base element of disease mechanism but in terms of diagnosis, prognosis, treatment and morbidity, they are wildly different. I think the HN crowd may be interested in learning more about TNM staging (https://en.wikipedia.org/wiki/TNM_staging_system https://en.wikipedia.org/wiki/TNM_staging_system) and the staging process in detail (https://www.facs.org/media/j30havyf/ajcc_7thed_cancer_staging_manual.pdf https://www.facs.org/media/j30havyf/ajcc_7thed_cancer_stagin... pg 457 for prostate) . This was once "open source" but is now locked behind a proprietary API of sorts (https://drive.google.com/file/d/1sa2Qlv03-E-nBJuUynZuFxIaMsOIrWp0/view https://drive.google.com/file/d/1sa2Qlv03-E-nBJuUynZuFxIaMsO...) These are US oriented resource links. Regarding the posted article, there are two big related factors that the average patient has a difficult time appreciating. First is that "doing nothing and or waiting & seeing", even in 2024, is still the best course of treatment for a huge array of situations. The second related factor, is that the rate of preventable medical errors is absolutely staggering. In my multi-decade experience it typically hovers over 20%. As a patient myself I have been the victim of three near fatal preventable medical errors. So 1/5 of the time doctors are creating new problems and complications that are preventable if all of the known best practices at the time are employed, while attempting to resolve whatever is wrong with you. A troubling amount of the time the treatment can be worse than the disease.
nominated1 3y ago
I’ve been quite curious about Cancer since losing my mom to it two years ago. I’m currently infatuated with the idea that Cancer my well be parasites reaching various stages of killing the host. Parasites, their preferred habitats, diet, chemical excretions, breeding and life cycles in general has been enlightening. Could some seasonal allergies or colds be the Jarisch-Herxheimer reaction to parasites… these are the kind of questions I find when not looking. I guess the biggest question I have is, why if after countless autopsies that confirm the deceased had parasites do we not investigate this subject more? Humans are one of the rare species that don’t receive preventive treatment or screenings for parasites. Cattle, fish, birds, pets, all manner of zoo animals… but not humans?
- jrpt 3y ago
  Because cancer isn't a parasite. They are your own cells, just with various mutations. A parasite is a foreign living organism that lives off of another, for example, a parasitic worm. Anyone can easily confirm cancer cells are genetic mutations to your own by doing a genetic test - and in fact this is done regularly, it's called a germline and somatic genetic test, which can help identify if certain drugs would work well on the cancer. This is a form of personalized medicine.
  - nominated1 3y ago
    My description that “Cancer my well be parasites reaching various stages of killing the host” wasn’t great. > They are your own cells, just with various mutations. Could parasite eggs lodged deep inside tissue for a long time (a fusion or sorts) not produce similar results? Have any studies along those lines been done? EDIT: Could the chemical signal they excrete to keep the eggs dormant or the chemicals they excrete at time of death cause a mutation or other illnesses? Any reason why we don’t treat humans with preventives or do screenings for parasites? I remember reading that it’s estimated that 80% of the population likely has some kind of parasite. I not trying to drift off subject. It just seems to be a gaping hole that the medical industry has no interest in.
    - 3y ago

80 points by isaacfrond 3y ago

https://archive.is/xfZdx https://archive.is/xfZdx

> Renaming the lowest-risk prostate cancer would cut down on overly aggressive treatment, some doctors say I'm very skeptical. My father died from metasticized prostate cancer, and I'm now showing elevated PSA, though needle biopsy and MRI found no cancer. It's true that prostate cancer is slow-growing, and it affects older men. So the theory is most men die of something else and it's not worth aggressive treatments. That may be true--but there's no reason not to call a cancer "cancer." 65% of men are obese or overweight. So it follows that an obese 70 year old--and the majority of men--who are diagnosed with prostate cancer may die of something else first. But it would be wrong--and unfair--if right-sized people were denied or discouraged from aggressive treatment because the population as a whole had other health issues.

Ma8ee 3y ago
(I didn’t read the article due to paywall). The reason they are reluctant to aggressive treatment is because risk of side effects that affect quality of life, such as impotence and incontinence. Do you want to wear a diaper for the rest of your life or live with a relatively low risk of earlier death from cancer?
- s1artibartfast 3y ago
  FYI, It seems like you are agreeing with the parent post, but your tone comes off pretty hostile. What point are you trying to make?
  - Ma8ee 3y ago
    My point is that it isn't population considerations that make physicians reluctant to treat many cases of prostate cancer, but balancing relatively low risks of the cancer being aggressive against quite severe quality of life degradation for the individual patients. I really don't see how my post would be considered hostile.
    - jrpt 3y ago
      The vast majority of radical prostatectomies don’t have incontinence (like 95%), and impotence isn’t common either. Furthermore, they’re usually in older men who are already impotent. Many years ago incontinence was a side effect but it isn’t common any longer as surgery has gotten better. The story of how they discovered the nerves they were cutting that causes impotence is kind of crazy, because for years it is basically like nobody even looked into it. Then one day someone decided to and they figured it out pretty quickly. That was in 1982.
      - Ma8ee 3y ago
        I don’t have time to dig out some definitive study, but top google results list incontinence as a “common” side effect.
        jrpt 3y ago
        I’m talking about long-term incontinence which is what people are most concerned about. You probably are reading about short-term incontinence. If you are having a radical prostatectomy done, you probably are hoping to live at least ten more years or even longer, so you’re basically saying you want short-term pain (surgery, pain, incontinence, etc) for long-term peace of mind (no metastases).
        Sebb767 3y ago
        1 in 10 is the usual order of magnitude for side effects labelled "common", so this doesn't disagree with the 90% number at all.
    - 3y ago
- fortran77 3y ago
  I would happily wear a diaper in my 70 and 80s if I was in good health otherwise.
  - petesoper 3y ago
    There is a solution for chronic cases like this: a manually operated valve that stands in for the sphincter. Some of the guys in my prostate cancer support group have described this as "life changing".
    - fortran77 3y ago
      Yes! Also, most people will dribble a bit when they get old no matter what--with or without prostate cancer. I'm much more concerned about my mental health than having to wear incontinence pads in my 80s.
s1artibartfast 3y ago
>But it would be wrong--and unfair--if right-sized people were denied or discouraged from aggressive treatment because the population as a whole had other health issues. I agree. Public health professionals should not engage in deceit in the name of the public good. Utilitarian arguments may rationalize net benefit on average, but that comes with winners and losers. The goal should be clarity of communication, even if it is sub-optimal.
- tptacek 3y ago
  Is cervical dysplasia a deceptive term? CIN 3 dysplasia seems pretty close conceptually to grade 1 prostate cancer. There are doctors on HN, maybe one of them will set the record straight. This doesn't seem like one of those things where public health officials are trying to mind control the public with terminology. There are precancerous neoplastic illnesses, and cancer is defined by the threat of metastasis, which is sort of exactly what you don't have with grade 1 prostate "cancer".
sebtron 3y ago
Sorry for the nitpick, but that 65% number looked very high, so I checked and it is more like 40% according to what I found [1]. [1] https://www.who.int/news-room/fact-sheets/detail/obesity-and-overweight https://www.who.int/news-room/fact-sheets/detail/obesity-and...
- atdrummond 3y ago
  Likely difference between international and U.S. numbers.
- greenhexagon 3y ago
  OP said "65% of men are obese or overweight" but your source is only obese. CDC says 73.6% of adults are overweight or obese (https://www.cdc.gov/nchs/fastats/obesity-overweight.htm https://www.cdc.gov/nchs/fastats/obesity-overweight.htm)
  - sebtron 3y ago
    No, my source says overweight (which includes obese). Your source is for the US only.
sroussey 3y ago
For when it metastasizes, aggressive treatment is to get rid of every trace of testosterone in your system. Prostate cells are regulated by it, so removing it is pretty effective… for a while…
- Auracle 3y ago
  As someone who suffered awfully low testosterone for years due to a brain injury (but still not 0), that sounds awful.
  - imtringued 3y ago
    15 years of suffering chemotherapy to get a statistically insignificant extension of your life span? It's a steal according to HN.
i_cannot_hack 3y ago
Your analysis is contradicted by the evidence presented in the article. > One study took 1,600 men with low-risk prostate cancer in the U.K. and randomly assigned them to get surgery, radiation or active surveillance. Fifteen years later, the researchers found that mortality rates for all the men were low, and similar for each group no matter which approach they took, according to the study which was published last year in the New England Journal of Medicine. If aggressive treatment regularly saved lives the healthiest 35% of the population, one would probably see a noticeable difference in mortality between the randomized groups. Maybe it would be possible to find flaws in the study, or an interpretation of the results that would align with your analysis, but it seems like you haven't engaged with the evidence at all.
- Someone 3y ago
  > If aggressive treatment regularly saved lives the healthiest 35% of the population, one would probably see a noticeable difference in mortality between the randomized groups. It isn’t different from no treatment according to that statistic, but it does save lives. Unfortunately, it also kills about the same number of men. It also, for thousands, decreases quality of life. Unnecessary operations can have side effects and there are scares on early false positives. Even the visits for checkups decrease quality of life a bit, and you’ve to do millions of those to save a life. The problem is that, once the word ‘cancer’ has fallen, people categorize dying and side effects such as erectile dysfunction as the cancer’s fault and surviving as being thanks to medicine. So, on parties, they’ll say “doctors saved my life” and “cancer killed my brother”
jdietrich 3y ago
>But it would be wrong--and unfair--if right-sized people were denied or discouraged from aggressive treatment because the population as a whole had other health issues. Everyone should be discouraged from choosing treatment that does more harm than good, which (unfortunately) is practically the norm for cancer treatment in the US. If a treatment is described as "aggressive", it is usually inappropriate - aggression is rarely motivated by a thoughtful and careful consideration of the facts. The fear of cancer is wholly understandable, but it often leads to avoidable harm. We're very good at identifying tumours and suspicious cells, but we're very bad at predicting which of those will actually develop into serious disease. As a result, far too many patients are being subjected to painful and risky treatments with life-altering side-effects for no clear clinical benefit. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4322920/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4322920/
refurb 3y ago
But that’s how public healthcare works. You create a system based on population level evidence. If regular mammograms don’t reduce cancer deaths, then you don’t pay for them. That might be some people get diagnosed later, have to undergo more aggressive treatment, but that added cost is more than offset by not paying for mammograms for the entire population. Works great at the population level, but at the individual level it may mean some people “slip through the cracks”.
- fortran77 3y ago
  I don't disagree! But perhaps they should have two sets of "actuarial tables" -- one for the overweight/obese majority, and one for the right-sized miniority. When ever I see a study that doesn't talk about the "elephant in the room" I don't trust it. There's a prostate cancer treatment algorithm that the Mayo Clinic uses that separates obese people from healthy-weight people. I trust that.

strogonoff 3y ago

TL;DR Doctors consider renaming low-risk prostate cancer to something else, because calling it “cancer” prompts aggressive treatment that doesn’t improve the outcomes. Since other low-risk cancers were already renamed, it does not seem controversial. Perhaps a more correct way forward is to stop assuming cancer = death, but that seems unlikely. I wonder if the stress from knowing you have cancer contributes to stress, inflammation, and as a result worsens the illness or makes it less likely to resolve.

beAbU 3y ago
It's only years later, well into my adult life, that I learned that "melanoma" was actually skin cancer. I always thought it was just a nasty mole. Various members in my family and circle has had a melanoma, my father had two in the last 10 years. It was only when a friend of mine was diagnosed very late, after the damn thing spread to his lymph system when I realized "holy shit this is actually cancer". Another friend had a "cancer scare" and broke contact with all of us for months while she was dealing with the trauma and anxiety. Only much later did we learn she had a /possible/ melanoma. Most of us were kind of baffled by the reaction. It's interesting how naming scary things sometimes greatly contributes to the actual scare-factor of the thing. Where if it's unnamed, or receives a benign name, then most ignore it.
- tptacek 3y ago
  Melanoma is the scariest kind of skin cancer, for what it's worth; it's a term that technically should scare you more than "skin cancer".
  - dehrmann 3y ago
    It's certainly scary, but it's on the skin, so it's easy to spot, and when spotted early, it's easily cured. Lots of qualifiers there, so check those moles.
  - Sebb767 3y ago
    > it's a term that technically should scare you more than "skin cancer". For the unitiated: Why?

throwaway20222 3y ago

When my wife was diagnosed with thyroid cancer our doctor said the same thing was being discussed about reclassifying her diagnosis as well. His assertion was that a lot of thyroid cancers aren’t even discovered until post mortem from another cause of death. Also that the standard treatments are so effective, and in some ways unique to thyroid cancer (radioactive iodine treatment specifically) that the cure rate was very high. This was a decade ago and while I remember reading up on it at the time, I don’t have any primary research to back this up so take it with a grain of salt.

BeetleB 3y ago
> I don’t have any primary research to back this up so take it with a grain of salt. Iodized?
colordrops 3y ago
Depends on how advanced. I had a relatively fast growing papillary thyroid cancer that was already 3cm and spread to my lymph nodes. Still relatively "easy" to address, and I've been in remission for 10 years, but if my thyroid was not removed, and I didn't take the radiation treatment, I probably would have been toast long ago.

puchatek 3y ago

I would like to know whose stands to benefit from this the most. Is it about improving quality of life for patients? Or to save costs for health insurers who won't have to pay for treatment of the side effects of the more aggressive options?

TylerE 3y ago
The former. Something like 75% of men in their 80s probably have some sort of mild prostate cancer. It’s just extremely prevalent but most of the time they are rather non-aggressive so you will die of something else years before you’d even think of worrying about the cancer killing you.
eru 3y ago
In a competitive market, insurers don't really care one way or another whether something should be covered or not: they just adjust premiums accordingly. (Ideally, as a customer you'd have a choice between plans that do and do not cover a particular treatment.)
epistasis 3y ago
Insurers are incentivized to set standards for spending as much money as possible on all health care. They have maximum profit rates, as a percentage of revenue. So the two ways to grow the revenue, and therefore profit, are to 1) capture a larger percentage of patients, and 2) make sure that all patients, including competitors, start using more expensive care options all together. System-wide cost savings do not increase insurance company profits. This could be considered a good thing or a bad thing, depending on your point of view, I guess. I had always considered it a bad thing, but given the thrust of your comment, perhaps it's good that there's no incentive for health care companies to push cost-savings measures as an industry.
- imtringued 3y ago
  And this is why having government funded basic healthcare isn't as inefficient as so many people claim. For the government the only thing that matters is net tax revenue. Healthy people pay more taxes and unhealthy people cost money. So the solution is obvious: invest in effective low cost preventative treatments and cures. That maximizes net tax revenue. Meanwhile private insurers only care about your health to the extent that they get paid. Healthy people bring in less money than the chronically ill.

pintxo 3y ago

One big problem today is, that professionals have voted to reduce screening because of the side-effects of treatment. Especially on those, non-threatening, low risk cancers, which would (likely) never have posted a risk. If removing the cancer label on those, and thus remove most of the useless treatment, this would be a net positive for all men. As we could start to role out society-wide screening. And really catch the problematic cases. Like men in their 40s or 50s getting prostate cancer. Today we have voted (in most western countries) to not screen at all because the cost (in human suffering, not money, although that’s surely also a problem) of over-treatment is higher than the cost for those who die early because their cancer wasn’t found early enough. Which basically means we let people die, because we are not able to manage low risk cancer cases correctly. Source: I’ve once been the tech part of a prostate cancer patient network startup for seven years. Turns out it’s hard to make it cash positive.

glonq 3y ago
Can confirm. Due to late/lazy screening, my cancer was caught late and now I'm fighting an uphill battle. It doesn't seem like rocket science to screen early but also not over-treat.
- meepmorp 3y ago
  I hope you win your battle.
- tetramer 3y ago
  Hey friend, I'm so sorry you're going through that and I wish you the best of luck in your journey. I would argue though that it's not rocket science...currently, it's a lot harder with many more unknowns. Some of the issues we face are: - Imperfect screening tests: the (very real) risk of both false positives and false negatives - Lack of great prognostic models: if we think a certain cancer has a 25% chance of metastasizing within 5 years and I have 4 patients in front of me, how do I know which is the one? - How do we identify if we're actually changing the trajectory of cancer with certain treatments? If a treatment fails, is it because we didn't choose the right treatment or is it reflective of underlying aggressive disease biology? - Mass amounts of data from new technologies: this is obviously great and has allowed us to become granular with cancer in a way we haven't been able to before. It's important to recognize that widespread next generation sequencing is something we've had for less than a decade, and we have identified a lot of risk factors with this BUT it's also raised many questions (e.g. what mutations are actually significant?). - Being human: every individual has their own values. Some patients will hear that it's a 1% chance this will become cancer and be okay with monitoring it. Some patients hear 1% and think it's too much of a risk and want intervention. I think, with time and more data, we will become a lot better at this. But it's really not easy.

tetramer 3y ago

The general public definitely doesn't have a great understanding of the word "cancer." Patients often don't know that prostate cancer is not the same as lung cancer is not the same as colon cancer, etc. And unfortunately, cancer is a lot more nuanced than that with a lot of heterogeneity even within a cancer type, e.g. an 80 year old male incidentally found to have an elevated PSA and subsequent low grade prostate cancer has a biologically different disease than a 35 year old who comes in with de novo metastatic prostate cancer. I wish we had better ways of predicting what a patient's life will look 1 or 5 or 10 years down the line. We're developing the tools to do that, but there is still a significant amount of uncertainty and we can't eliminate that anxiety for patients. I don't know if re-naming low risk prostate cancer will do that either, but I can't say I feel strongly about it one way or another. I hope that the population starts to get a better understanding of what "cancer" really is (i.e. a very wide spectrum of diseases), the inherent uncertainty associated with the diagnosis, and that we continue to get better predictive tools in the meantime.

verisimi 3y ago

Cancer is a brand name tm. It makes people do stuff, get treatment etc. The brand is beneficial to the medical system, which about managing disease for profit, rather than making people well.

piva00 3y ago
> The brand is beneficial to the medical system, which about managing disease for profit, rather than making people well. This is a very American point of view, other places in the world do not have this issue but cancer is still a serious disease. Not every disease is an invention of the for-profit medical system of the USA.

deleted 3y ago

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bayouborne 3y ago

Intel's Andy Grove in the mid '90s was particularly candid about his experiences and I think his willingness to discuss his experiences with the then state of the art advanced the public discussion in a healthy way. https://fortune.com/1996/05/13/andy-grove-prostate-cancer-cover-story/ https://fortune.com/1996/05/13/andy-grove-prostate-cancer-co... https://www.forbes.com/forbes/2008/0128/070.html https://www.forbes.com/forbes/2008/0128/070.html

duffpkg 3y ago

Wrote Hacking Healthcare, managed hospital systems, blah, blah... I remember first learning about cancer treatment and encology in detail when we took over management of a health system with a large set of encology centers. It was very eye opening to understand that one word, "cancer", is really an inappropriate blanket term for hundreds of more or less distinct diseases. Yes, they share a base element of disease mechanism but in terms of diagnosis, prognosis, treatment and morbidity, they are wildly different. I think the HN crowd may be interested in learning more about TNM staging (https://en.wikipedia.org/wiki/TNM_staging_system https://en.wikipedia.org/wiki/TNM_staging_system) and the staging process in detail (https://www.facs.org/media/j30havyf/ajcc_7thed_cancer_staging_manual.pdf https://www.facs.org/media/j30havyf/ajcc_7thed_cancer_stagin... pg 457 for prostate) . This was once "open source" but is now locked behind a proprietary API of sorts (https://drive.google.com/file/d/1sa2Qlv03-E-nBJuUynZuFxIaMsOIrWp0/view https://drive.google.com/file/d/1sa2Qlv03-E-nBJuUynZuFxIaMsO...) These are US oriented resource links. Regarding the posted article, there are two big related factors that the average patient has a difficult time appreciating. First is that "doing nothing and or waiting & seeing", even in 2024, is still the best course of treatment for a huge array of situations. The second related factor, is that the rate of preventable medical errors is absolutely staggering. In my multi-decade experience it typically hovers over 20%. As a patient myself I have been the victim of three near fatal preventable medical errors. So 1/5 of the time doctors are creating new problems and complications that are preventable if all of the known best practices at the time are employed, while attempting to resolve whatever is wrong with you. A troubling amount of the time the treatment can be worse than the disease.

nominated1 3y ago

I’ve been quite curious about Cancer since losing my mom to it two years ago. I’m currently infatuated with the idea that Cancer my well be parasites reaching various stages of killing the host. Parasites, their preferred habitats, diet, chemical excretions, breeding and life cycles in general has been enlightening. Could some seasonal allergies or colds be the Jarisch-Herxheimer reaction to parasites… these are the kind of questions I find when not looking. I guess the biggest question I have is, why if after countless autopsies that confirm the deceased had parasites do we not investigate this subject more? Humans are one of the rare species that don’t receive preventive treatment or screenings for parasites. Cattle, fish, birds, pets, all manner of zoo animals… but not humans?

jrpt 3y ago
Because cancer isn't a parasite. They are your own cells, just with various mutations. A parasite is a foreign living organism that lives off of another, for example, a parasitic worm. Anyone can easily confirm cancer cells are genetic mutations to your own by doing a genetic test - and in fact this is done regularly, it's called a germline and somatic genetic test, which can help identify if certain drugs would work well on the cancer. This is a form of personalized medicine.
- nominated1 3y ago
  My description that “Cancer my well be parasites reaching various stages of killing the host” wasn’t great. > They are your own cells, just with various mutations. Could parasite eggs lodged deep inside tissue for a long time (a fusion or sorts) not produce similar results? Have any studies along those lines been done? EDIT: Could the chemical signal they excrete to keep the eggs dormant or the chemicals they excrete at time of death cause a mutation or other illnesses? Any reason why we don’t treat humans with preventives or do screenings for parasites? I remember reading that it’s estimated that 80% of the population likely has some kind of parasite. I not trying to drift off subject. It just seems to be a gaping hole that the medical industry has no interest in.
  - 3y ago