The cancer that some doctors don't want to call cancer
wsj.com
wsj.com
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.
E.g. PSA (a blood value, easy to measure), if increasing very slowly over a long timeframe, is a good indicator that you may have cancer but that it is growing really slow, aka unlikely to be aggressive and to be an immediate problem. While a quick increase tells you the opposite.
Then there is DNA sequencing of cancer samples from a Biopsy. Which is evolving rapidly and should be soon cheap enough to be available at scale.
The problem then is, if you rename the "grade 1" condition "prostate dysplasia", some fraction of patients don't do the follow-ups, and then those misclassifications are a big deal. But if you don't rename it, some fraction of patients get unnecessary treatment that lowers their quality of life.
So it's an interesting dilemma.
If the population who do _not_ actually have serious cancer is orders of magnitudes larger than those who do then there will be far more people in the false positive group than the true positive group and thus the vast majority of operations will be unnecessary.
The key here is how we manage the positive ones. And this is where the current system fails. We have yet to find a good way to manage them without doing unnecessary treatments causing more harm than good.
But instead of fixing this problem, we opted to stop screening. Which, for me, sounds stupid. But it sure is easier to do.
A pandemic is different, there the goal is to optimize the outcome for the population.
Applying the latter to the former is at the very least cynical. The opposite is what got us anti-mask and anti-vaxxers.
Also, especially with cancer, people tend to be so affraid of the diagnosis, they look for excuses to not be examined. As if cancer onpy pops up when it is found or something. Which is stupid, if ypu have cancer you want to know as early as possible.
I have no idea where you're going here. Wearing masks and getting vaccinated benefit both the individual and the population. (That actually contributed to it being politicized -- your choices affect my chances of getting a nasty disease).
At the individual level, you wear a mask when appropriate and get vaccinated, then you're less likely to get the disease and it's likely to be less severe if you do. Likewise, the population benefits from less disease spread, and less strain on the healthcare system as many of these cases become outpatient "take some Paxlovid" type deals.
Where is there any sort of basis for anti-mask and anti-vax theology here?
We treat false-positives and low-risk patients that actually don't need treatment. As any treatment, at scale, invariably results in (averse) side-effects, that's a problem.
And the easiest way to get rid of false-positives is to not screen in the first place.
For breast cancer the statistics are the same as for prostate cancer, there is no society net-benefit to screening, as false-positive side effects are equal or worse to the benefits of the screening.
But, women are way better in handling (their) health than men, the public outcry over removing breast cancer screening would be load.
In other words, men are not load enough when it comes to (their) health. Which is no surprise I guess.
Also I feel like it's actually getting worse, sometimes I am wondering if this is a covid side-effect thing.
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.
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.
This is also why doctors are increasingly recommending that young, healthy people not get routine annual checkups and blood work done unless they have any specific problems.
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.
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.
Iodized?
(Ideally, as a customer you'd have a choice between plans that do and do not cover a particular treatment.)
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.
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.
Cost is a big factor in which one you go with. So while insurers do make more money by paying higher and more claims, that’s offset by customers wanting a low price.
[1] https://www.ama-assn.org/delivering-care/patient-support-adv...
[2] https://www.ama-assn.org/delivering-care/patient-support-adv...
Individual companies wanting particular things covered is quite different. And the topic of this thread is why is the entire field shifting in their care in terms of what's thought to be medically best.
Cancer treatment to this day is not magic, it's not like taking a pill other than in extremely rare cases. You should spend time looking at cancer statistics, the oft mentioned statistics state death rates are a result of "cancer or cancer treatments" because the treatments take a toll on your body and leave you disabled or infirmed for the rest of your life. Until we have better treatments, which are coming, yes if a tumor will go away on its own you best believe it this is better for the quality of life for patients. In fact, the people who stand to lose the most from such a re-diagnosis would be drug manufacturers or even hospitals who can charge a lot for radical surgery and hospices who care for patients undergoing chemo.
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.
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?
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.
>I really don't see how my post would be considered hostile.
To make a point, you are quite literally asking someone with elevated PSA, whos father died of prostate cancer, if they want to wear a diaper.
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.
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".
[1] https://www.who.int/news-room/fact-sheets/detail/obesity-and...
CDC says 73.6% of adults are overweight or obese (https://www.cdc.gov/nchs/fastats/obesity-overweight.htm)
> 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.
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”
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.
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”.
There's a prostate cancer treatment algorithm that the Mayo Clinic uses that separates obese people from healthy-weight people. I trust that.
I think the HN crowd may be interested in learning more about TNM staging (https://en.wikipedia.org/wiki/TNM_staging_system) and the staging process in detail (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-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.
https://fortune.com/1996/05/13/andy-grove-prostate-cancer-co...
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.
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.
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.
For the unitiated: Why?
In most of the cases I have direct experience with, the melanoma is "simply" removed, and /maybe/ some local radiotherapy in extreme cases.
No-one I know of received chemo. Nor was bad diet or unhealthy lifestyle blamed for the appearance of the melanoma.
Ask me how I know, and I'll tell you about a nine-fingered person.
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?
> 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.
My guess is people are in effect checked for parasites by way of annual bloodwork and annual checkups. If someone started losing weight, for example, they'd go see a doctor who might investigate for parasites if the symptoms point to it. There is probably not much reason to do an annual parasite-specific test in people. Livestock cannot talk to us about their symptoms, and eat all sorts of crap, so there's some important difference there.
My understanding is that parasite eggs can live outside the host for months if not longer (surviving long winters, etc) and can be smaller than the eye can see. They’re effectively unavoidable and that a healthy immune system keeps them in check.
> they'd go see a doctor who might investigate for parasites if the symptoms point to it.
I am really struggling to see any interest in the subject and very little data. From what I’ve seen doctors are fairly dismissive even when the patient brings it up (although this appears to be mostly hearsay but again to little data on what would seem to be a fascinating subject for researchers).
Anyway, thanks for your time.