Paul Sanders, Warrior, Washington State Representative 1977-1988

In the UK, especially over the last two years, it is very obvious that the goverment/medical profession are trying to make men aware of PC and the PSA test but also explaining the limitations before the DRE and PSA test are carried out.

These are the only two initial tests available in the UK/world and at the end of the day it’s up to the individual whether he gets tested or not!

“John Neate, Chief Executive of The Prostate Cancer Charity, said: ‘We support the Chief Medical Officer’s decision to alert all GPs to these new research findings and to the Prostate Cancer Risk Management Programme, aimed at providing advice to GPs on how to counsel men who request a PSA test but have no symptoms. Undoubtedly, given the significance of the new studies and the Government’s decision to ask the UK National Screening Committee to review this new evidence, many men will now be more aware of the PSA test and may be seeking access to this.

“It is essential that GPs are equipped to guide men through the pros and cons of PSA testing, enabling them to make the right decision for them. Currently, hundreds of men who request a PSA test face opposition from their own GPs, who themselves are either not fully aware of the issues surrounding the test or do not support a man’s right to make an educated decision to have it.

“It is critical that the Committee’s review is as robust and as speedy as possible and The Prostate Cancer Charity as well as other key groups are invited to contribute to the review.

“This new announcement highlights the critical importance of the development of a new generation test that can identify aggressive forms of prostate cancer and differentiate them from slow growing forms of the disease. Such a test would enable treatment to be focussed on men for whom prostate cancer poses a serious risk to their health and avoid the over treatment of men with the harmless, slow growing forms of the disease. We look to the Government to adopt a leadership role in ensuring that the UK is able to play its full part in the global search for such a test.”

‘Mr Williams, 59, a council job advisor, said: “A lot of men, particularly in parts of the valleys, want to have a PSA test but are told to come back when they have symptoms.”‘

I agree, and would have hoped that this would have been an inference drawn from the “new” studies. Starting …” when they are children and teenagers!” what they learn then will likely be obsolete by the time the boys are middle-aged men, so the doctor’s office will still have to play the major role in the process. I remain disappointed that the official statements didn’t call for better disclosure throughout the “screening through treatment” process of prostate cancer.

I always thought that it was strange that women mostly see GYN/OBs throughout their adult lives, while men mostly see family practice docs. Maybe the women had the right idea all along and that’s why they don’t get prostate cancer. ;-)

In my opinion, of course.

You are absolutely correct! I agree with you 100 percent. But this isn’t exclusive to prostate cancer. This is because (in general) men receive NO health care education whatsoever — from their parents or from anyone else. This is a major societal issue that needs a major societal effort. It is not exclusive to prostate cancer — but prostate cancer is exclusive to men! This is why the mission of the Men’s Health Network is so intimately critical to the missions of the many prostate cancer advocacy organizations — and gradually these organizations are starting to appreciate this interconnection!

There is just one small problem. It is no use waiting to try to give men this sort of information when they are 35 or 40. We’re going to need to start when they are children and teenagers!

I’m glad that you have seen some progress since Dr. Carroll published his editorial in 2005, but having only been following PCa closely for the past year, it just looks to me like more and more men are being screened earlier and biopsied more with smaller and smaller cancers being detected. I wonder what the numbers of men treated are — it sure seems like a lot of urology practices have bought Da Vinci robots lately and I assume that they are using them.

As for the irrationality that you cite, I believe that it is largely due to the public perceptions that I stated above “…the general perception that PSA is a good screening tool for prostate cancer … biopsy will find and stage any prostate cancer, and treatment will usually cure the cancer without major side effects.” There is no effort underway that I am aware of to lessen the fear of prostate cancer.

As for my decision, it was based on the fact that I did have some symptoms and some cancer, and there are enough studies published that say that conventional biopsy (mine was 10 needles) misses or understages up to 50% of prostate cancer. I had two urologists and a radiation oncologist tell me I needed to treat the cancer and that an RP would be the best way to do that. I was nervous on surveillance, and I think that those are pretty good reasons to be nervous. My expected longevity computes to over 30 years — I wanted know where I really stood with respect to the cancer, and I still think that a 3D mapping transperineal biopsy is the best method available to determine that. Once that biopsy was done and I knew where and what the cancer was, I chose to have it treated rather than wait around to see if it would progress. Except for the catheter time, the treatment itself was easier than the biopsy in some ways and it cured my symptoms. What I would hope that what men will take from all this was that I made an informed decision and took the risks I chose to take.

The worst part of the whole process was the diagnosis itself and learning that the cure could be worse than the disease — things I was blithely unaware of and wish I would have known much more about before my first PSA and certainly before my trip to the urologist.

What are you going to tell the descendants of those who ARE going to die of prostate cancer today? So far, current medical practice has only put a 20 to 30% dent in the death rate which remains low ~3%.
What do you tell them when men are screened, biopsied, treated, and die from prostate cancer anyway? What does the urologist tell the man who had an RP but whose prostate came back clean from pathology? What do you tell the man who has one of the rare atypical aggressive prostate cancers? It is easy to play “what if” as to the manner of anyone’s death, and we all are going to die. The only complete solution to prostate cancer would be to RP all men on their — say — 35th birthday, make it kind of a rite of passage like circumcision is in some cultures. Otherwise, prostate cancer will continue to be part of the lives (and ~ 3% of the deaths) of most men who live long enough to be considered elderly.

I don’t think that we should stop the “big clinical trial” in its tracks, and have never said that we should — we should just do a much better job of informing men what they are getting themselves into before they take step one in the process — the first PSA screening test.

As someone who has been watching (and participating) in all of this since PSA testing was first introduced, I have to disagree with you about some (but by no means all) of what you are saying.

First, a lot has actually changed since Dr. Carroll wrote that editorial (which I congratulated him on at the time). For starters, there are regular publications about the role of active surveillance in the urology literature. Prior to that editorial, such articles had barely existed except for those from a few brave souls like Gerry Chodak and Peter Albertsen, who were then roundly criticized by their peers.

Second, even the AUA has had to “pull back” from the highly aggressive stance that it had in the past, in which it recommended annual PSA and DRE screening for every man in America over 50.

Third, in the “Joint Statement” issued by the advocacy groups the other day, we also made it clear that we did not — as a group — advocate for mass screening.

Now … with respect to the issue of patient knowledge and physician behavior … I have to tell you that many men, when told by their primary care physicians that screening is probably inappropriate for them, promptly ignore their doctor and go right ahead anyway. You may have seen the article the other day by Jane Brody about elderly her male friend who, at age 83, was still having PSA tests, insisted on a biopsy, and then insisted on treatment. Is that his right? Of course it is. Is it insane? Of course it is. Is it VERY American? Absolutely. Where do you believe the responsibility of the patient and his family lies in all of this?

You are using math in an attempt to prove a point. I believe everyone understands the point. Even the AUA. The problem we are dealing with is not a rational one, it is an emotional one that you would like to be solved rationally. It ain’t gonna happen buddy! There is no more sense to this than there is to the hundreds of thousands of women who, having had a tiny lump in their breast that was never going to cause progressive breast cancer in their lifetimes, are treated with surgery and hormones and whatever else, label themselves as “survivors,” and don pink T-shirts and go on 60-mile walks over 3 days. It all has to do with the risk of death from cancer, which — for reasons I have never been able to understand — people fear in an utterly irrational manner.

You can point fingers wherever you like. Does the AUA carry some blame? Sure it does. Do the Prostate Cancer Foundation and US Too carry some blame? Sure they do. Do I carry some blame? Yes I do. And now would you please explain to me why — with 2/51 biopsy cores positive and a Gleason score of 6 — you decided you needed treatment (albeit focal)? Based on your own argument, you should have simply ignored the whole thing, shouldn’t you? You had an extremely high probability of indolent disease.

And you still didn’t answer my other question. What am I meant to be doing about the 28,600 men who ARE going to die of prostate cancer in American each year. What do I tell them — and their sons and their grandsons today?

The point — that I have articulated poorly — is that when you look at what is really happening with whatever you choose to call the prostate cancer world (Terry Herbert’s “Strange Place”) consisting of men in the general population, patients, advocates and doctors over the entire cycle from screening test to biopsy to treatment to follow-up and including possible death from prostate cancer: the cup is half full and gets emptier at every stage. That is what these new studies confirm.

Men are under-informed throughout the cycle starting with PSA testing. The statements issued by the organizations that you have posted only serve to buoy up the general perception that PSA is a good screening tool for prostate cancer. This is as true as others: biopsy will find and stage any prostate cancer, and treatment will usually cure the cancer without major side effects. Taken individually, these are half truths; taken together, they are a false impression, but never-the-less the prevailing one.

When Kathy Meade said in one of the TNPCIL fora: “Men are just part one big informal clinical trial,” I thought that she just meant in terms data collection. These studies tell me that what is known about PCa detection and treatment (as well as the need for detection and treatment) is so vague that men are “part of’ the trial the same way a lab rat is from the first time blood is drawn for a PSA test” — they just don’t know it, and the sign over the door they enter the maze through says, “His Family Doctor, MD.”

PSA testing is offered to men in the general population who are at an overall 3% risk of dying from prostate cancer. One of the studies says that PSA screening reduces mortality 20%. By my math, that is about ~0.6% of men in the general population. Given that number (or choose another -– it will still be small) many men should have second thoughts about PSA testing -– and more men would if the biopsy procedure and treatment options and side effects have been explained to them. My point is that men have the right to make an informed choice before they take the first step, and it should be based on their family history, prostate health, their feelings toward treatment, etc.

Change needs to happen, men deserve to know what they are getting themselves into. These studies could have been impetus for change -– instead they are being used to reinforce the status quo. Nothing has changed since Dr. Carroll published an editorial in the Journal of Urology in 2005 under the heading, “Early Stage Prostate Cancer: Do We Have a Problem with Over-detection and Overtreatment or Both?.”

This latest chain of events will only serve to make things worse.

5thString,

I wonder what the trade off in cost and pain wise would be when you factored in the biopsies that you could possibly avoid through PCA3 testing.

The PSA test along with the DRE are the only initial, cost-effective tests available.

I am sorry but you have completely lost me. What is your point?

Bad doctors give their patients bad advice. Good doctors give their patients good advice. You think the glass is half empty. Others think the glass is half full. Michael Barry explained that exquisitely well in the New England Journal editorial.

There are no absolutes here. That is the problem. If you are trying to convince me (and presumably others) of something specific that we don’t already know, what is it?

If you are under some illusion that I am defending the AUA’s statement, please don’t make that assumption. If you think there is some general statement that is applicable to all men and that encapsulates what they should do, please tell me what it is, because I don’t know!

I am interested in stopping 28,600 American men a year dying of prostate cancer as soon as possible and NOT harming anyone else along the way. Please tell me how this is to be done based on the currently available information. You are simply confusing me with random pieces of information — all of which I already understand.

If you are suggesting that no one should get a PSA test unless they have some other specific risk factor for prostate cancer, I don’t think that is going to wash very well with the thousands of men under 55 who have been diagnosed with Gleason 7 prostate cancer (or higher) using the current — and certainly poor — diagnostic protocols, and who then went on to have what many of them consider to be successful treatment.

I hear what you are saying about accelerating PCA3 trials — why didn’t any of the groups say it?

What difference does it make what you replace PSA testing with? The study said: “PSA-based screening reduced the rate of death from prostate cancer by 20%.” Given that we are only working with a ~3% death rate from PCa, we’re talking about 0.6% of the male population. Isn’t that cutting it pretty thin?

If you plug in “best case” numbers that the improvements that PCA3 testing may offer in place of the PSA numbers, is the result still so unimpressive due to the vagaries associated with biopsy and treatment that you still won’t see much improvement in longevity?

Aren’t the majority of any longevity gains because PSA is being used as an excuse to biopsy?

When will men start getting told the real odds of anything involving prostate cancer at any point in the process from screening to treatment — Jim West’s last comment germane?