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Medicine

The Cancer That Doctors Don't Want to Call Cancer (wsj.com) 163

When is cancer not cancer? It's an unexpected question that has stirred the world of cancer treatment in recent years, most notably now with prostate cancer. WSJ: A growing number of doctors are advocating what might seem like an unusual position: That low-grade prostate cancers that grow very slowly or not at all shouldn't be called cancer or carcinoma. The reason, they say, is that those words scare men, their families and sometimes even their doctors into seeking more aggressive treatment than patients need -- leaving men with debilitating side effects -- rather than pursuing a carefully monitored wait-and-see approach.

A name change wouldn't be unprecedented. Certain other forms of thyroid, cervical and bladder cancers have been reclassified, sometimes partly to avoid scaring people about cancers that are unlikely to spread. "The word 'cancer' engenders so much anxiety and fear," says Dr. Laura Esserman, a professor of surgery and radiology at the University of California, San Francisco and director of its Breast Care Center, who is advocating for a type of lower-risk breast cancer to be renamed. "Patients think if I don't do something tomorrow, this is going to kill me. In fact, that's not true."

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The Cancer That Doctors Don't Want to Call Cancer

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  • by Anonymous Coward on Thursday January 25, 2024 @01:20PM (#64187560)
    The bigger problem is that prostate cancer treatments are literally 20 years behind the curve. Right now, the main treatments are only radiation or surgery. Both have significant quality of life issues. There are better treatments out there but they are only now starting to be covered by insurance. I had a HIFU (High Intensity Focused Ultrasound) treatment but had to pay for most of it out of pocket (was 25K and I'm glad I did it). Insurance won't pay for HIFU treatments right now because the long term treatment statistics are still being generated.
    • by garyisabusyguy ( 732330 ) on Thursday January 25, 2024 @01:31PM (#64187608)

      Agreed there is a huuuge disconnect between what is coming out of "moon shot" cancer research and what insurance will pay for

      If we left it to the insurance companies, they would probably identify the cost savings of killing off the elderly and be done with it

      I find that an unsatisfactory solution

      • there is a huuuge disconnect between what is coming out of "moon shot" cancer research and what insurance will pay for

        That isn't all bad. Dying people are vulnerable, they get sold on some unproven, super-expensive experimental treatment and are just convinced that medical science has finally, just now, created the exact thing needed to save their life. So they're upset that insurance won't cover it.

        In truth, the vast majority of experimental treatments don't work and never make it into general use.

      • > If we left it to the insurance companies, they would probably identify the cost savings of killing off the elderly and be done with it

        The obvious conflict of interest here is obvious and palpable. However, there is a sinister other side of the medal. The elderly are literally used by the providers (doctors, hospitals, provider networks, all of whom are for profit businesses in the US) as ATMs. If someone is covered by Medicare (and often dual eligible for Medicaid), is old and senile, has no relatives

      • If we left it to the insurance companies, they would probably identify the cost savings of killing off the elderly and be done with it

        You write that as if it is hypothetical.

    • by smooth wombat ( 796938 ) on Thursday January 25, 2024 @01:35PM (#64187634) Journal
      The bigger problem is that prostate cancer treatments are literally 20 years behind the curve. Right now, the main treatments are only radiation or surgery. Both have significant quality of life issues.

      There may be a third option in the near future. As mentioned on Sunday [slashdot.org], a potential cancer vaccine using the body's own immune system is in Stage 3 trials. So far it's showing outstanding results in cases where it's already been used.

      The most recent data presented at an academic conference showed nearly 95% of people given only the vaccine were still alive three years after starting treatment and 64% were still disease-free. Among the most advanced forms of melanoma, disease-free survival after three years for people with stage III disease was 60% in the vaccine-only group, compared to about 39% in the placebo group. Disease-free survival for those with stage IV disease was about 68% in the vaccine-only group, and zero in the placebo group.

      • by jd ( 1658 )

        Immunotherapy is highly promising. Not necessarily for all cancers, but a decent range of them. That is an area I will be watching with interest.

        I will also be looking at research into DNA repair mechanisms. DNA damage is one vector for cancer, so if there's a way to bolster DNA repair or GMO humans into using repair mechanisms that exist elsewhere in nature, it'll be interesting.

        LINE1 research is also looking intriguing. This is a retrotransposon that is implicated in a lot of cancers, but nobody understan

    • by bobby ( 109046 )

      I'm glad you found HIFU. I came here to write about it. Not sure which treatment you had, but a friend of mine is an R&D engineer at a transducer company.

      Probably 15 years ago,.I believe he built the first tiny (small grain of rice sized) transducers that can be threaded transurethrally into the center of the prostate to heat it

      If it's a more aggressive malignancy, other treatments are proton beam and CyberKnife, as well as surgery.

  • Seems these days people love to hide their head in the sand. Cancer is cancer, and there are very aggressive forms of Prostate Cancer that can kill, though rare.

    Looks like a training issue for the Care Provider, they could start of explaining this can be treated 100%. I am also sure Lawyers will love to sue if someone dies from one of these "not-cancer" cancers.

    • by jd ( 1658 )

      There is nothing wrong with having a series of names that differentiate the mechanisms involved and the threat level, but, yeah, you don't want to lose information through naming conventions.

      Fear is best dealt with through education. There is no security through obscurity.

    • Seems these days people love to hide their head in the sand. Cancer is cancer, and there are very aggressive forms of Prostate Cancer that can kill, though rare.

      Looks like a training issue for the Care Provider, they could start of explaining this can be treated 100%. I am also sure Lawyers will love to sue if someone dies from one of these "not-cancer" cancers.

      When people receive a cancer diagnosis, their rational thinking processes are often seriously compromised. At that time a care provider's explanations may not be processed rationally, or even heard at all. So I'm all for reclassifying prostate cancer if that leads to less panic, better decisions, and an increase in survival rates.

      It's also worth noting here that surgery can result in a faster spread than doing nothing would. Even biopsies can result in metastasis of a cancer which might otherwise have cause

  • by PackMan97 ( 244419 ) on Thursday January 25, 2024 @01:23PM (#64187574)
    My father-in-law had prostate "cancer" and what he liked to say was that no one dies from prostate cancer, they die with prostate cancer. He declined aggressive treatment and instead lived happily until sepsis from a gall bladder infection got him about 10 years later.
    • by dgatwood ( 11270 ) on Thursday January 25, 2024 @01:33PM (#64187620) Homepage Journal

      My father-in-law had prostate "cancer" and what he liked to say was that no one dies from prostate cancer, they die with prostate cancer. He declined aggressive treatment and instead lived happily until sepsis from a gall bladder infection got him about 10 years later.

      Flip side, my great uncle had it, caught it too late, and it metastasized to his bones. He did hormone treatment for a while, and eventually died from it, I think.

      The critical thing is knowing which group you're going to fall into.

      • Flip side, my great uncle had it, caught it too late, and it metastasized to his bones. He did hormone treatment for a while, and eventually died from it, I think.

        Ditto for my uncle. He was in denial about his prostate cancer and put off treating it until it was too late. It ended up killing him.

        To the point of the article, there's a lot to be said for keeping people from freaking out over a scary word. One reason screening for various types of cancer isn't done more widely is because false positives can

      • Flip side, my great uncle had it, caught it too late, and it metastasized to his bones. He did hormone treatment for a while, and eventually died from it, I think.

        This happened to my dad. The treatments worked for a few years, but eventually spread to his bones. He was pretty active until the last few months though and died at the age of 94 so can't really say life is unfair.

    • by waimate ( 147056 )
      People die of prostate cancer - similar numbers to women dying of breast cancer. Note "die of", not "die with". The truism that "you're more likely to die with than of" is a great disservice to men -- it's only true because (pretty much) half of all men will die with some evidence of extremely slow growth prostate cancer, detectable only during autopsy. But plenty of men die "of" prostate cancer. In some demographics, more men die of prostate cancer than women die of breast cancer. BUT - many more years
      • In some demographics, more men die of prostate cancer than women die of breast cancer. BUT - many more years are lost to breast cancer and it sometimes involves young women leaving young children, so it's more tragic.

        As Garrison Keillor says "There is no tragedy in the death of an old man. "

    • Obligatory XKCD: https://xkcd.com/1827/ [xkcd.com]

      Your father in law's saying is lucky to apply to him, but it shows an incredible amount of survivorship bias. Prostate cancer can spread. If it stays in the prostate then survival is almost guaranteed. If it doesn't then it almost certainly is not.

      In other news I've jaywalked all my life and never once been hit by a car, that doesn't mean I advocate we remove pedestrian traffic lights.

  • ...of cancer
    Slow growing tumors that cause no problems
    Tumors that can be successfully treated if caught early
    Tumors that spread like unstoppable wildfire
    The one-liner I remember is...
    Most men will die with prostate cancer, not because of it

    • by HiThere ( 15173 )

      Except it really depends on where that slow-growing cancer is. I had one that was elevating the kidney blood pressure by growing around a tube that the kidneys needed to drain through. It was slow growing, alright, but it needed to be excised anyway to save the kidneys. I think they left rag ends of that thing in place, but it no longer grows in a solid ring around the urethea(?). (Well, it's been decades. I *think* it was the urethea, but I'm not sure.)

  • by dpilot ( 134227 ) on Thursday January 25, 2024 @01:26PM (#64187584) Homepage Journal

    As a man in his late 60s, I've gotten the impression over the years, and my doctor has not denied this, that every man will die with prostate cancer. Notice I said "with", not "of". My interpretation is that the biological engineering of the prostate just isn't that good - they're failure prone. And let's face it, they're good enough. They practically always get us through our reproductive years. The "bad" cases of prostate cancer - like Frank Zappa and Daniel Fogleberg, hit in the late forties or early fifties. That's after normal reproduction, though still during child rearing years. Usually it's later than that, when the kids have flown the coop.

    The other factor is if or when prostate cancer metastasizes. If it does, it's really nasty, one of the nastier cancers, and doesn't respond well to treatment. But catching it early and proper treatment generally keeps it at bay. It's a "maintainable" condition, which is probably why they're looking at re-classifying it.

    Yes, my father had it. A friend of mine has it. My brother might have it. I had a scare almost a decade ago but am apparently OK. I absolutely get my routine check on it.

    • There are rogue cells all over our body that are either slow-growing or partially kept in check by the body's defenses. Only when they spread far enough do we notice them as "cancer". It's probably why there has never been a mutation that makes a person live to 150, entropy eventually wins.

      Age-related slowdown in metabolism is a mechanism to keep the rogue cells in check, but it also gives us achy joints, wrinkled skin, etc. Thus, the only way to truly "reverse aging" is to do body-wide DNA repair, somethin

    • I lost a good friend the same way. Not all prostate cancer is the same. Over treatment is an issue, but failure to treat can be fatal.
    • by hughbar ( 579555 )
      I'm in my early 70s and have had Gleason 6: https://ascopubs.org/doi/10.12... [ascopubs.org] diagnosis for about four years. I've chosen active surveillance, PSA tests and an MRI at defined intervals. It hasn't evolved according to the people watching it. If it does, I'll go to treatment, meanwhile I'll just get on with my life.

      There's quite a lot of downside to both surgery and some of the treatments too. So, long story short, this is probably a good attitude as long as urology/oncology are paying attention.
    • by thegarbz ( 1787294 ) on Thursday January 25, 2024 @05:37PM (#64188210)

      that every man will die with prostate cancer.

      Two people's prostate cancer are not the same. Many people will get prostate cancer and will life just fine with it. Many other people will die. Your family lives, that's of little consolation to the 35000 people that die in the USA every year "OF" prostate cancer, not just "with".

      • When I was diagnosed with prostate cancer my doc told me that almost all prostate cancers are slow growing and will not cause serious problems but a few are aggressive, and the problem is that we can't reliably determine which are and which aren't. Therefore, given that I'm relatively young (for a prostate cancer patient) and in otherwise good health, he recommended and I agreed to treat my cancer aggressively. I had a radical prostatectomy in 2015. So far my PSA remains undetectable. (touch wood) Yes, ther
  • Sticks and stones may break my bones but names will severely maim me? I’m not sure I’m remembering that right.
  • Standard practice was not to treat prostate cancer as you will most likely be incontinent and the chance of death was small.

    Can't tell you how many people I knew who probably died because of that.

    Yeah yeah yeah, anecdote is not data (except those data points get ignored) and whatnot, but-

    This manipulation of people to guide their choices is heinous.Tell people what are their options, what the chances of survival are, and what life will look like if they survive.

    Advocate for your patient's autonomy. They ult

  • My understanding is that every type of cancer is essentially a unique disease, and to generalize it to "the big C" is not really helpful in understanding the prognosis or treatment of the specific disease. This is why there will never be "a cure for cancer" because there is no single "cancer" disease that can be targeted. So I have no problem with not calling it cancer, since it's just become a scare word with little clinical significance.

    • by HiThere ( 15173 )

      It's worse than that. Every cancer is potentially a unique disease. It's caused, after all, by the mutation of a cell (often not involving the genes, but still a mutation). This happens by random chance influenced by environmental insults and genetic susceptibility.

      Most cancers are harmless. Most of them are killed off by the immune system. We only hear about the ones that are neither of those. So the cancers we hear about have been through a pair of filters, and the ones that make it through both filt

    • That's false. Just because each cancer is unique doesn't mean we can't have a cure for it. The reason we can't cure it is not because "every cancer is unique" but because cancer mutates. For one thing cancer has certain hallmarks that can be used to identify it. Every cancer needs to have a set of mutations that are different than normal cells of the host. These mutations give the tumor the ability to Stage 1. grow uncontrollably Stage 2. push surrounding tissue Stage 3. invade surrounding tissue Stage 4. s

    • Genetically distinct, maybe. But really, it has to flip specific genetic switches to result in the uncontrolled growth that falls under the definition. Lots of genetic mutations cause problems but aren't cancer. Only ones that specifically affect cellular division are going to have that result.

      It's like saying there's no such thing as a duck. You can look how it walks, how it quacks, and its genetic lineage and you are more than capable of classifying it.

  • You're more likely to die with it than from it.

    Calling it something other than "cancer" is probably not getting to the heart of the matter--participants in the health care system that are making money from unnecessary treatment.

    If they want to address the issue of growth rate vs. risks of treatment, maybe what we do need is a companion scale to the "stage" of cancer. Say perhaps, "stage 1, aggression 10" needs to be treated even though it's small, whereas "stage 3, aggression 1" in an 80 year old patient

    • You're more likely to die with it than from it.

      This is why they use a scoring system to describe prostate cancer.

      https://www.pcf.org/about-pros... [pcf.org]

    • by waimate ( 147056 )

      You're more likely to die with it than from it.

      Yes, but only because most men will have some evidence of prostate cancer when they die, detectable only by autopsy. In terms of dying "of", the numbers are similar to women dying of breast cancer. So this is not a disease to disregard.

      • by sjames ( 1099 )

        The issue is that our detection is improving to the point that we now detect cases that previously would only have been noticed at autopsy. Interesting that you compare it to breast cancer. There are new recommendations for delaying treatment upon first detection of low grade breast cancer because it is known to actually disappear untreated in some cases. The issue is the same, we've gotten better at early detection.

  • Uh, the problem is when the stage of the cancer changes it is too late to do anything. But hey, insurance companies get to save money by only treating a few cases.

  • Cancer Categories? (Score:5, Insightful)

    by Midnight Thunder ( 17205 ) on Thursday January 25, 2024 @02:31PM (#64187798) Homepage Journal

    Would it not be worth borrowing from diabetes and simply adjusting the naming to include a type categorisation? For example "Cancer Type 1" or "Cancer Type 2". They would be still considered cancers, but from a medical and communication perspective at least it would help people put things in the right perspective.

    • There are currently some 300 different cancers. And those are just the major ones.

    • You mean like stage 1, stage 2 etc? They already do this [cancer.ca] and given that this site claims the 5-year survival rate for stage 1 prostate cancer is 101% you can even recover from it without even having it!

      I do not see how telling someone that they have prostate cancer but that the stage of the cancer means that they have a 100% (or higher! ;-) survival rate counts as "scary".
  • My journey ... (Score:5, Informative)

    by Anonymous Coward on Thursday January 25, 2024 @02:38PM (#64187814)

    Old time member here ... been of this site for maybe 25 years ...
    Posting anonymously due to privacy ...

    I live in Ontario, Canada, where we have 'socialized medicine' (in USian parlance).
    The guidelines doe not recommend screening all men for prostate cancer. Rather, they restrict that to high risk (Sub Saharan African descent, family history, ... etc).

    But my family doctor said he saw many cases, and when I turned 50, he was performing digital rectal exam (DRE) every year, and recommended that I do PSA testing every year, even though it is not covered by the government. So I followed his advice.

    When the PSA level started crossing the threshold of 4 ng/ml, he referred me to a urologist.
    He did a DRE, and found not nodules, and asked for another PSA test.
    He then found the ratio of free/total PSA being has crossed a threshold, from 0.17 to 0.2, and sent for a biopsy.

    That was an unpleasant experience, but the lab results showed that out of 12 needle cores in (2 in each of 6 areas), one needle had 20% cancer.

    For prostate cancer, something called a Gleason score is used. It is actually two numbers. The first is the most prevalent type in the specimen, and the second is the next most prevalent.

    So a Gleason of 3+3 = 6 is what the article is talking about. It is very unlikely to become a problem for the patient, and could be monitored. The reason is to spare them the side effects of treatment (which is either surgical prostatectomy nowadays done robotic and laparoscopic, or radiation). This is called Active Monitoring.

    In my case, it was Gleason 3+4 = 7, and no invasive cribriform component, and no intraductal carcinoma. That means I have favorable intermediate.

    This Prostate Predict [predict.nhs.uk] tool from the NHS, gives life expectancy with and without treatment (surgery or radiation), as well as the likelihood of side effects that various treatments cause.

    Based on my age, PSA at diagnosis, and the biopsy results, this diagram [imgur.com] shows that with treatment, there are 3% more survivors than without treatment over 15 years. But there is still a 3% chance if dying from the cancer. But it is far more likely (18%) to die from something else.

    Side effects also vary. Even with robotic prostatectomy, there is a high chance that there will be incontinence and impotence. This is just because of how the prostate is located (it surrounds the urethra and is below the bladder), and because the pelvis is a busy place (unlike, say, a woman's breast) with lots of organs in it (intestines, colon, rectum, blood vessels, nerves, and so on ...)

    Remember how Lloyd Austin, the USA Defence Secretary got the surgery, and went home the next day, and came back a week after with infection and fluid retention pressing on his intestines? That is a rare case, but as with any surgery there are risks. These include blood clots, needing blood transfusion, ...etc.

    Most urologists are surgeons and they will recommend what they know: surgery. So most people with favorable intermediate prostate cancer will be rushed to surgery 'because it is cancer' without having the time to evaluate what other options they have. This can result in treatment regret, which has been studied scientifically [nih.gov].

    There are studies [nih.gov] that show that treatment delay for one year do not change the outcome.

    And there is no difference in outcome between surgery and radiation [urologytimes.com], based on the studies so far (15 year followup).

    I was fortunate to have the time to read a lot, and decided against the surgery.

    What I ended up getting is external b

  • It's frustrating that people continue to side step to avoid people's fears rather than address the problem.

    Item X is scary, let's give it a new name because then it's not as scary. This is running away from ignorance rather than addressing it.

    • Re: (Score:3, Insightful)

      by gweihir ( 88907 )

      Ignorance in adults can typically not be "addressed". See anti-vaxxers, flat-earthers, COVID-deniers, climate-change deniers, Trump fanbois, the religious, etc.

      • Ignorance in adults can typically not be "addressed".

        Ordinary ignorance can easily be addressed, it's willful ignorance that is much harder to solve and simply changing the name of something is not going to do it. If it did then we would have solved the anti-vaxxer movement by renaming vaccines something like anti-disease shots.

  • by gweihir ( 88907 ) on Thursday January 25, 2024 @03:07PM (#64187890)

    On the patient-side that is. If things have to be renamed because people are unwilling or incapable of listening to experts, then a new low has been reached.

  • I had a friend who ignored his prostate cancer. After all, though he was in his mid-seventies he was in perfect health otherwise.

    The cancer metastasized, and he died.

  • by Ranger ( 1783 ) on Thursday January 25, 2024 @06:33PM (#64188326) Homepage
    We get cancer cells all the time that is to say mutated cells that our immune system destroys. When it's no longer recognized as an abnormal cell and begins to grow into clusters and start to develop blood vessels, angiogenesis, then it becomes a problem. So, yes, it's a problem that prostate cancer is over-treated. When they aren't too concerned about it, it's called watchful waiting. No treatment is necessary because it grows slowly. If it picks up and starts to grow, they'll treat it. And mutations can manifest themselves in different ways. If your PSA (prostate specific antigen) level is below 4 that's supposed to be nothing to worry about, but men can have stage 4 prostate cancer that has metastasized and to other parts of the body and have a low or undetectable PSA and there are men who can have a high PSA an not have cancer. Those are outliers and PSA score is a good tool, but doctors need to be aware of it's limitations. The PSMA PET scan is a new tool to find out if the cancer has spread (prostate specific membrane antigen). It's a good target for treatment to. Andy Taylor of Duran Duran was treated with an injection of Lutetium-177 which targets only prostate cancer cells [healthline.com]. It's not a cure but will buy him more time.
  • I Beg To Differ (Score:3, Interesting)

    by Java Commando ( 726093 ) on Thursday January 25, 2024 @07:50PM (#64188472)
    Here's where I resolutely beg to differ with this lazy and spineless mindset. I invite anyone to watch their dad die of metastatic prostate cancer as I just did this past November, and then tell me we should downplay the significance of this disease. If it's cancer it's cancer, and trying to pass it off as something else is a disservice to men. And guess what: My dad was a retired physician, and he followed his own training in writing off prostate cancer as something that might cause him harm. He was old enough by contemporary "wisdom" that he felt he'd die of something else before prostate cancer ever had the chance to cause his demise, so he didn't pursue getting checked out. Thus his cancer went unchecked, it invaded his bones and lymph nodes, and was far too advanced when discovered to make a sustainable cure possible. It was a miracle in and of itself that hormone treatments were able to extend his life by ~6 years, but sooner or later the cancer becomes resistant, and then you die horribly. This is no joke. This form of cancer it that bad.

    My overall pet peeve with society is how we're compelled to dumb down terminology because people are either too ignorant or too chicken to deal with it. Stop dumbing it down, dammit. Simply teach people those "big" words-- Teach patients the reality of prostate cancer: First of all, IT'S CANCER. It's not a hangnail, it's not a goiter: CANCER. Second of all, most patients present the slow growing variety. Great. But it's CANCER, and you must proactively get yourself regularly checked for any worrisome progression. Creating a false sense of security because as a practitioner you're too chicken to tell it like it is doesn't help anyone. Lay out the facts, deal with them logically and intelligently, and stop trying to downplay a disease that essentially impacts HALF OF THE ENTIRE HUMAN POPULATION ON THIS PLANET.

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