Nothing is straightforward in the cancer world.

May 24, 2016 6:16 PM

More Men With Early Prostate Cancer Choosing to Avoid Treatment [Gina Kolata, New York Times]

From the above link:

"In the Gleason system, which involves a pathologist’s assessment of how ominous the prostate cells look, 6 is actually pretty much the lowest score for cells that are cancer, despite the Gleason scale officially starting at 2. The highest is a 10. But many men, hearing that their cancer is a 6, assume the worst.

"In the new system, which has been endorsed by the World Health Organization, instead of calling the cells Gleason 6, they will be called Group 1 in a scale that goes from 1 to 5.

"One issue complicating the active surveillance questions, said Dr. Alan J. Wein, the chief of urology at the Perelman School of Medicine, is that the long-term outcomes are unclear.

"'We need follow-up of at least 10 to 15 years to be sure we are not hurting these people,' he said. 'The problem is we've been in the active surveillance business only since about 2000, and everyone started off very, very slowly. No one really has a number of patients who have gone for years and years."

Older Men Are Still Being Overtested for Prostate Cancer [Paula Span, NYT]

"There’s little medical dispute, however, about stopping PSA screening for men unlikely to live more than nine or 10 years because of their age and health. That so many in this category continue to be screened nonetheless — two million men older than 75 in 2013, the Chicago researchers estimated — is cause for considerable dismay.

"For starters, the PSA test loses accuracy at older ages. In fact, abnormal results quite often return to normal in subsequent testing.

"Yet abnormal results often lead to more invasive testing and then to treatment — surgery or radiation — that can cause life-altering side effects, including incontinence and sexual dysfunction.

"'A PSA screen is not just a blood test,' said Dr. Victoria Tang, a research fellow at the University of California, San Francisco, and the lead author of the V.A. study. 'It's signing up for a prostate biopsy if the screening is positive. And that biopsy can cause pain, bleeding, infection.'

"The biopsy, taken with a rectal probe, finds cancer in only 30 percent to 40 percent of men with abnormal PSAs, Dr. Eggener said. If it's a low-risk cancer in a man unlikely to live another 10 years, guidelines advise 'watchful waiting' or 'active surveillance.'"

Previously: Is innumeracy harming the quality of medical care?

posted by joseph conrad is fully awesome (28 comments total)

That's really interesting, because I thought it was common practice to do nothing for older men with prostate cancer, since most older men (above a certain age) will die of other causes before the prostate cancer will become a problem.
posted by xingcat at 6:59 PM on May 24, 2016

Kinda related, my great-aunt has fragile bones and yet she was still given a breast cancer examination recently, which ended up dislocating one of her ribs :/

There are adivised cut-off ages for many cancer exams but a lot of doctors ignore them.
posted by subdee at 7:00 PM on May 24, 2016 [2 favorites]

Smack in the middle this is the brass tacks.

“I tell patients, this is a bet,” he said. “You are betting that the disease is not going to progress, or if it progresses, you will be able to tell before it progresses to a situation where it is less treatable. You enhance the chances of winning the bet by doing a confirmatory biopsy.”

So basically, you're gambling that the cancer is both slow growing and won't metastasize. Now in the case of prostate cancer both are quite commonly true. But sometimes a piece of cancer will dislodge itself, head to your liver and lungs and then proceed to murder you rather quick and in a less treatable way. If you're over 75 there are a billion things other for you to worry about that will probably kill you sooner and even if your prostate cancer decides your esophagus is a good place to take up residence you got what we guaranteed you when you signed up for this whole life thing.
posted by Talez at 7:01 PM on May 24, 2016 [1 favorite]

That's really interesting, because I thought it was common practice to do nothing for older men with prostate cancer, since most older men (above a certain age) will die of other causes before the prostate cancer will become a problem.

I'm not so sure about that. My sister is actually a cancer researcher, specializing in prostate cancer, and according to her at least, men aren't being tested enough, and prostate cancer may be responsible for deaths attributed to other causes. For example our grandfather died of a cancer that spread his spine; this would have been around 1989 or so. Although prostate cancer wasn't attributed as the cause of his death, according to my sister it seems *likely* that it was.

So my point is that the cancer was aggressive, and that he didn't have to die had the (theoretical) prostate cancer been identified early.

Now that I think of it, a good friend of mine, 50-ish, was just treated for prostate cancer. It would have killed him before anything else, so he needed to get screened and needed to get treated.
posted by My Dad at 7:17 PM on May 24, 2016 [3 favorites]

since most older men (above a certain age) will die of other causes before the prostate cancer will become a problem

My dad's urologist guessed that he had a 50/50 chance of dying from something else first.
posted by Slothrup at 7:18 PM on May 24, 2016

Huh, that caught my eye, since I'm meeting with the doctor tomorrow about my Gleason score of 6, most likely thanks to genetics and heredity. That is, I have a couple genes that indicate a large prostate cancer multiplier, two of my great uncles died of prostate cancer, and just about everyone in my family now expired has a COD of one type of cancer or another. I'll almost certainly go the watchful waiting or "active surveillance" route, though I am in my 50s and theoretically could choose the more aggressive radiation seed treatment. Thanks, but no thanks. I hated the biopsy, which hurt like a bastard, and from the article, I see I'll get to hate it once a year for the rest of my life. Yay.

Anyway, a couple of initial observations. First, in the age of the Internet, I don't know why people would freak out about a Gleason 6 and go for aggressive treatment. It literally takes 2 minutes to figure out, from reliable sources, that it's a low-level cancer rating. Plus, my doctor was careful to say so. Yes, their example person was acting on from a 2010 diagnosis, but the Internet was prominent six years ago, too. I dunno, I guess a lot of people hear the word "cancer" and flip out, just want it gone ASAP and damn the consequences. I'm rather more used to cancer from watching it pick off older and occasionally younger relatives. But, there's still an important lesson in the story about informed medical decisions.

Second, although I know this site needs little to stoke outrage about medical politics, I found it interesting, in a not-cool way, that if I had no insurance, the prostate biopsy and associated events would have cost around $5,000, and counting. Because I have decent insurance with Blue Cross Blue Shield, the bill was immediately reduced to $2,000. Yup, having fairly good insurance--not using insurance mind you, but just having it--put the biopsy on 60% off sale. The USA continues to have a seriously broken medical system. Not really news to anyone who has had to deal with a significant medical issue here, although in its defense, the medical people themselves have always been professional and competent.
posted by mdevore at 7:41 PM on May 24, 2016 [14 favorites]

When I was in my late 50's, I got a new doctor. I was dreading the glove-up-the-ass treatment, but it turned out that neither that nor a PSA test was required. This was about 8 years ago, which was, as I have come to understand, about the time when doctors started to change their mind about prostate cancer detection.

There are other more troubling things to worry about, when one gets to the stae of being fêted as an elder.
posted by kozad at 7:43 PM on May 24, 2016

“I tell patients, this is a bet,” he said. “You are betting that the disease is not going to progress, or if it progresses, you will be able to tell before it progresses to a situation where it is less treatable. You enhance the chances of winning the bet by doing a confirmatory biopsy.”

So basically, you're gambling that the cancer is both slow growing and won't metastasize.

But the fallacy in the brass tacks is the idea that the only tools available are the PSA test or the biopsy. There are many other options available these days besides "active surveillance" and the PSA test, and they have been around long enough that the article should have at least mentioned them. Active surveillance and PSA both have shortcomings, and there are other blood and urine tests on the market that are even covered by insurance. These can give more information about what a man's cancer risk is, without the risk that is inherent to biopsy and with a lot more accuracy than the PSA test. "Active surveillance" is typically annual or so biopsies of the prostate - painful and somewhat risky. The PSA test is not specific - that's why it is not as widely recommended. If one has a dangerous cancer, their PSA test will be high; conversely though, a high PSA score can be caused by many things besides cancer.

But it's not true that a man has to just accept that PSA means cancer or have endless biopsies that keep reporting on Gleason 6 tissue. Other tests can be done.
posted by Tandem Affinity at 7:47 PM on May 24, 2016 [1 favorite]

I dunno, I guess a lot of people hear the word "cancer" and flip out, just want it gone ASAP and damn the consequences.

There are a couple interesting issues going on here. One is happening at the personal level - with the FPP raising the question of innumeracy (related to another important concept here, health literacy) harming the quality of care.

Another is happening at an aggregate level, and it's really similar to the research on mammograms - or, perhaps a better example is what's happened for decades with antibiotics. The safest bet in an individual case might be to prescribe antibiotics, but when you aggregate cases, this prescription habit causes significant population-scale problems.

It's interesting to see the conversation around some of this move into new areas not just about treatment but even to testing, too - which can have a pretty reliably-calculated effect even though "test less" (actually "test more discerningly") goes against a lot of medical and public health orthodoxy.
posted by entropone at 8:03 PM on May 24, 2016 [2 favorites]

I should note that I opted for a second PSA test three months following the first, before acquiescing to the prostate biopsy. This rather surprised the doctor, who said a lot of patients upon receiving results of a high PSA immediately opt for a biopsy. The situation is a real-life example of where cancer fear and the innumeracy of the general population factors into bad decision-making. Unfortunately, my second PSA result was even higher, meaning the "velocity" was not in my favor. Even there, though, a quick search shows that PSA velocity as a measurement on determining risk remains controversial.

Regardless, deep breaths, and don't get a prostate biopsy based on one unfavorable PSA test results. Well, maybe if it's in the double-digits.
posted by mdevore at 8:25 PM on May 24, 2016 [2 favorites]

Out of curiosity, mdevore, since your doctor was surprised you wanted a second PSA, did he suggest other options?
posted by Tandem Affinity at 8:30 PM on May 24, 2016

He said there were other, more technical, blood tests they could do, but they could only provide further indications much the same as PSA, and the only way to know for sure was to get the biopsy. He also said there was a good chance I would eventually get a biopsy at some point down the line, based on my PSA results and given my family/genetic background.

On the other hand, he did present the second PSA test as a legitimate option, and did not try to push me in any direction or act as if I made a substandard choice when I said "yeah, I'll see you in 3 months", so I'll give him props for that.
posted by mdevore at 8:39 PM on May 24, 2016

First, in the age of the Internet, I don't know why people would freak out about a Gleason 6 and go for aggressive treatment.

The number of women who race to lumpectomies and even mastectomies based on a diagnosis of DCIS, which properly speaking isn't even invasive cancer, is astonishing. And then when newspapers run articles about adjustments to the screening guidelines you get openly moronic comments like "My mother and aunt both died of breast cancer. If my doctor had followed the guidelines and not had me screened at forty, I would be dead now!"

It is reasonable to have some skepticism about medical recommendations--whether to act or not to--but there is a lot of stupidity out there when it comes to statistics.
posted by praemunire at 9:08 PM on May 24, 2016 [4 favorites]

The number of women who race to lumpectomies and even mastectomies based on a diagnosis of DCIS, which properly speaking isn't even invasive cancer, is astonishing. And then when newspapers run articles about adjustments to the screening guidelines you get openly moronic comments like "My mother and aunt both died of breast cancer. If my doctor had followed the guidelines and not had me screened at forty, I would be dead now!"

Hi. I had a left mastectomy based on a DCIS diagnosis. Recently. Last year. The pathology done after the tissue was removed revealed that the cancerous cells had broken out of the duct. My diagnosis changed to invasive ductal carcinoma.

I sure do love hearing on the internet how dumb I am about statistics!!!

DCIS is a complicated topic, but the standard of care is surgery. On very elderly women? Ohhhhhhhhhh, probably not. But I'd appreciate if you'd back off of "Only idiots who can't number get treated for DCIS." Thanks.
posted by purpleclover at 9:38 PM on May 24, 2016 [28 favorites]

If anyone wants to know what a prostate biopsy is like, imagine someone sticking a (smallish) staple gun up your ass, then firing it about a dozen times, say once every ten seconds.
posted by CheeseDigestsAll at 10:03 PM on May 24, 2016 [2 favorites]

If you want more info, here's a short series of educational videos on PSA testing I worked on a few years ago. It's a number of professors, specialists and researchers talking about PSA testing and the general topic of overdiagnosis, made for a health professional audience.

I'm happy to see the message is getting some traction among health professionals.
posted by fonetik at 10:41 PM on May 24, 2016 [1 favorite]

First, in the age of the Internet, I don't know why people would freak out about a Gleason 6 and go for aggressive treatment.

My dad was diagnosed Gleason 6, aged 59. We are in the UK and the NHS is far from perfect, but in this case the consultant was very thorough and recommended active surveillance.

However, a corporation called Intuitive Surgical has been aggressively marketing their 'Da Vinci' robotic surgery for removal of the prostate. They have ads on the internet that show you how brilliant their 2 million dollar robot is.

So there are some UK surgeons who know how to pilot the Da Vinci, and my dad paid 20 thousand GBP or so to have his prostate removed. The op left him impotent and partly incontinent, and with some residual prostate cells left behind in there that could of course turn cancerous at any time. That was 10 years ago.

I think the point is that if he had been told about the lower Gleason scale, it would have been a tougher sell for Intuitive Surgical to convince him that he needed to have it removed despite his NHS doc telling him he didn't. However, at the time, most people on the internet were more likely to be complaining that the NHS wasn't spending 2 million a time on Da Vinci machines for prostate removal.
posted by Coda Tronca at 11:58 PM on May 24, 2016 [3 favorites]

First, in the age of the Internet, I don't know why people would freak out about a Gleason 6 and go for aggressive treatment.

Oh, and I feel it's important to talk about this:
Health literacy is the degree to which people can obtain, process, and understand basic health information and make appropriate health decisions. It's related to general literacy, somewhat, but it has a few extra elements in there - particularly, being able to process complex information when there is a surprising and emotional element of one's own health.

In the USA, 12% of people have "proficient" health literacy. Everybody else is below that [srce]. So, yes, while it's easy to hear "Gleason 6" and spend eight seconds with Google to learn about what that means, that is a lot easier said than done - especially in the context of medical care.

Health literacy dramatically affects the care that people get - but what this really means is that the extent to which doctors/care-providers communicate appropriately to their audience (as opposed to, the extend to which patients are smart enough to understand what their doctors are telling them) affects care. it IS care.

You go around telling somebody that they're at 6/10 AND that that's the lowest score and you're bound to confuse people - you're bound to confuse people who have just heard that they have something that might kill them and they have to make a decision (NOW!) that will save their own lives.

That doesn't sound like a clear and effective system - and it's not one, because good information communicated badly wreaks havoc in this case, and in many cases throughout the medical system.
posted by entropone at 6:15 AM on May 25, 2016 [5 favorites]

Yep, I also have a male family member whose prostate surgery left him impotent and partly incontinent. We had several long discussions about it. The psychological and practical impact of the surgery's side-effects have had several deleterious consequences for his health; I'm glad more doctors are starting to take these into account when making recommendations for treatment.
posted by xthlc at 6:21 AM on May 25, 2016 [3 favorites]

But I'd appreciate if you'd back off of "Only idiots who can't number get treated for DCIS." Thanks.

That's actually not what I said. I said that responding to a proposed change in testing guidelines for non-high-risk groups with not only anecdata, but anecdata about someone who is blatantly obviously in a high-risk group, is moronic. And it is.

the standard of care is surgery

Probably won't be in the future, though, at least not for many patients.
posted by praemunire at 6:33 AM on May 25, 2016

DCIS is a derail in this thread — one I am happy to talk about at length over MeMail — but I was really responding to the suggestion that it was foolish for me to have been treated: "women who race to lumpectomies and even mastectomies based on a diagnosis of DCIS", "isn't even invasive cancer", "astonishing".

How much "not even cancer" should I have had before it's okay to "race"?

I take issue with the notion that the Narod study suggests that DCIS doesn't require surgery: Those 100,000 women were treated! With surgery and possibly radiation! And after that treatment most of their odds of dying of breast cancer were the same as an average woman. (There were a few groups who were much more likely to die.)

Esserman and her crew are trying to lead a revolution; they don't know all the answers. It would be GREAT if there were a protocol in which women could take an antihormonal or do some other kind of nonsurgical treatment to treat DCIS, but that doesn't exist right now. There's no possible reason to shame women who do get treated in the way the medical establishment currently suggests: a lumpectomy or mastectomy.
posted by purpleclover at 9:00 AM on May 25, 2016 [3 favorites]

It's easy to dismiss decisions to treat a possibly not life-threatening version of a "not-even cancer" as irrational when you aren't the one looking at films of your own body. Breast, prostate, whatever. Once you hear that "cancer" word thrown around about your own self, statistics are hard to hold onto as the basis for treatment decisions - you also have to take into account personal risk tolerance and the potential psychological consequences. I had early stage breast cancer myself and had the recommended lumpectomy and radiation. A year later, the self-doubt is so intense I'm wishing I'd had both breasts removed, because I feel like I didn't do enough to mentally feel that I've done all I could to prevent recurrence. This stuff is hard, and dismissing personal experience as moronic anecdata ignores that patients are people. We are more than the chemistry of our disease, and the diagnosis effects every part of life.
posted by something something at 9:34 AM on May 25, 2016 [8 favorites]

At my last check-up my doctor asked if I wanted a prostate test. I told him that I had read-up on the issue and concluded that the risk from testing is greater that the risk of cancer. He understood, and said that he does not get tested, either.
posted by Midnight Skulker at 9:39 AM on May 25, 2016 [3 favorites]

Just as a personal followup to my earlier mention, today the doctor said I was an excellent candidate for watchful waiting, and he doesn't disagree with my decision. During the conversation, he did check several times that I was OK with waiting, he said a lot of his patients are nervous after the diagnosis and insist on doing "something" about the cancer right away, so there's the tieback to the posted article.

For me, that means PSA test every three months, and another goddamn prostate biopsy in a year, unless the PSA shoots up to Very Bad levels before then. So, we kick the can down the road (he even used that phrase). Meanwhile, I'm hopeful that the continued influx of huge numbers of boomers with prostate issues means continued progress on that front, and a biopsy stops being medically indicated because, yeah, not a fun thing. Not to mention if and when I have to do something, I'd like it to not have all those serious side-effects that some of the current treatments warn about.
posted by mdevore at 10:31 AM on May 25, 2016 [1 favorite]

I don't think anyone should underestimate, it is a big deal psychologically to be told at 55-65 kind of age that you have cancer, of a type that does kill a lot of men statistically speaking, but then in the next sentence, 'really we can just wait and see what happens'. I'm not sure if there's many other cancers which are similar in this respect.

Given that in medicine there is a saying that 'the only *cure* for cancer is surgery' it's easy to see why robotic prostatectomy has been so prevalent in recent years. Then you add the hi-tech element to it (although it's still a very major operation) and the fact that wealthy, high-profile people like Robert De Niro and Andrew Lloyd Weber have opted for it, and you have another thing to add to the difficulty for men in making a decision about it.
posted by Coda Tronca at 11:47 AM on May 25, 2016 [1 favorite]

Get those little fuckers sooner rather than later.

/ cancer survivor
// just my 2 cents
posted by prepmonkey at 1:34 PM on May 25, 2016

I'm 53, male. Last fall a routine physical included a PSA test that was moderately high. Referred to a urologist, who suggested it be repeated in 3 months, and again 3 months after that. After the first repeat, it had climbed enough that the urologist recommended going ahead with the biopsy rather than waiting for the 3rd PSA test. It came back positive (Gleason 7), and based on my age and other factors, I decided on a prostatectomy (with the Da Vinci machine).

Surgery was straightforward, as these things go. I went in at 6:00 am Tuesday and went home at noon Wednesday. Had a Foley catheter for 10 days, and avoided lifting much weight for a month (to avoid hernias). Not much post-surgical discomfort (I used prescription pain meds for only 3 days, but was given enough for much longer). I have a 2-inch vertical scar above my navel, and several dime-sized scars scattered elsewhere across my stomach. Continence has been okay, potency could be better. My first post-surgery PSA test has come back "below detectable levels", and I'll do many more of them over the rest of my life.

The discomfort of a biopsy has been alluded to. It's not something I enjoyed, but it wasn't particularly bad either. I was given something like a valium (I forget the exact medication) on arrival at the doctor. A half hour later, I was given a dose of IV painkiller, and a local injection of a different painkiller, and an injection of antibiotics. I was awake and able to follow the procedure, but I was loopy. I could feel the biopsy needle go in and out, but it was more of a pressure than a stab.

After it was over, I found out a friend from college had had a prostate biopsy done as well. We were comparing notes, and he said how bad it hurt, and how he almost didn't let the urologist finish. I asked him if anesthetics didn't affect him, and he said "What anesthetic?" I spoke to my urologist about this, and he said that the thinking used to be that the needles went through a portion of the rectal wall that did not feel pain, and that the protocol did not formerly include tranquilizers and anesthetics, and that there are many "old-school" doctors who haven't yet gotten with the program and still do the procedure without painkillers.

I say all this to make this point. Some docs do biopsies with painkillers, and some don't. If you need a biopsy, get one that does.
posted by billm at 10:51 PM on May 25, 2016 [2 favorites]

the thinking used to be that the needles went through a portion of the rectal wall that did not feel pain

And nobody corrected that thinking after literally the first dude had the procedure?

Needs more 'evidence-based' medicine.
posted by Coda Tronca at 12:10 AM on May 26, 2016 [1 favorite]