Average age of PC diagnosis is 67; average diagnosis is low-risk. Viewpoint for consideration...

A few of the HW readers have pointed out to me that I rarely post my own personal opinions ; rather, most of what I post is merely a copy/paste or helpful interpretation of emerging findings or thought from the medical community of PC experts.   This is true, as I often find that others have been able to pull-together words around the complex subtleties of PC better than I can, and I don’t mind serving as the “messenger” to help provide support for our newcomers on the latest-and-greatest in this rapidly progressing field.   One of the key PC rules-of-thumb is that there is no one-size-fits-all solution, and this is one of the factors that makes this disease a challenge for the newcomers to understand.  The fact is that PC is really like two, or three, different diseases.   That being said, I offer up a commentary today for consideration targeted for the large subset of the newly diagnosed PC population — those somewhere close to the average age (67) of PC diagnosis in the US with low-risk or intermediate-risk PC.   In this case, this comment came not from the medical community per se, but from a highly respected PC layperson, Mike Scott, sitemaster of The “New” Prostate Cancer Infolink site.   Mike’s personal perspective: The basic problem is a cultural one … When we hear the word “cancer” most of us still assume it is a deadly disease. However, (as diagnosed today) most low-risk prostate cancers are not ever going to kill most of the men diagnosed with this condition … and especially not most of the men who are diagnosed at age 65 or older. A small subset of those men might need some hormone therapy near the end of their natural life, but hormone therapy for a couple of years when you are in your mid-80s sounds like a better bet to me that 15 years of urinary dribble and/or erectile dysfunction. I shall be 65 in 2 years time. I have no intention of getting any form of immediate treatment for low- or even intermediate-risk prostate cancer now. High-risk disease is a very different issue, but the probabilities of a diagnosis of high-risk prostate cancer are relatively low after age 65 if your PSA is still low at that age.     For those of you newly diagnosed with low-risk (or intermediate-risk) somewhere around that average age of 67, this savvy layperson’s perspective is offered for your consideration…

clocknut, the comment didn't specify that if he was diagnosed he would "do nothing." I can't say for sure, but being a savvy layperson, if he chose not to seek an aggressive treatment immediately after diagnosis (and, effectively, go onto AS, although he did not specifically call this out, either), I suspect that he would fully embrace the AS lifestyle changes that have been shown in many men to slow or stop PC progression. Hardly a "do nothing" approach, but I wouldn't attempt to put words into his mouth.

Furthermore, what he DID indicate is that if he did indeed need treatment later in life, he would choose a course of HT...again, not a "do nothing" strategy.  Deferred treatment is, I believe, the appropriate term.

It in this piece, it would have helped to have seen "Mike's" cancer stats. What was he really facing when he made his choice? Gleason? PSA at dx, and PSA trend? If he had one or more biopsies, what was the number of positive cores? How much cancer present in the core(s)? What was his general health condition?

Other words, we are being asked to study a treatment (or in this case, non-treatment) choice of "Mike" without seeing any of the factors or risks involved. I don't find that reasonable to evaluate his opinion on so little data. No difference than if some new guy comes here, and says, I have PC, and I am not going to treat it. Everyone would want to know more, to see if it was a sound and rational decision.

As far as "Mike's" decision, regardless of the lack of data, I say more power to him, as an individual. Each PC journey is intensely persona, and while I may or may not agree with another person's choice(s), I respect their right to be their own advocate, and to make their own medical decisions. Ultimately, its between the patient and their doctor(s).

If this is what "Mike" wants, I sincerely hope it works well for him in the years ahead. He would still always have the option of treatment in the future if his circumstances change, or if he simply changes his mind.

David in SC

clocknut said... I don't see any other way to interpret his comment " I shall be 65 in 2 years time. I have no intention of getting any form of immediate treatment for low- or even intermediate-risk prostate cancer now ."    Surely that means that, if diagnosed at age 63, even with intermediate risk prostate cancer, his mindset would be to seek no form of treatment (?) clocknut, maybe we are reading this differently... I read it as a deferred treatment strategy.

Jim, as you undoubtedly know, within the "intermediate-risk" category, there are those who are barely over-the-line from low-risk, and there are those who are barely under-the-line from high risk. Most clinicians treat the 3+4 patient differently than the 4+3 patient. Furthermore, you may or may not be aware (but Mike certainly is) that 3+4 intermediate-risk men, and relatively younger men, have been included in Dr Klotz's highly successful AS programs...

Anyhow, Mike is a savvy layperson who's perspective I believe is valuable...I take his comments, plus comments from other savvy laypersons such as JohnT, TC-LasVegas, iadt3since2000, and some others very seriously.

[At 49, I chose surgery for my intermediate-risk case.  I've said before that if I was 65 I probably would have chosen brachytherapy (due to less concern about late-term effects).  But this post isn't about me or the choices anyone else has already made.]

toyoung said...

All these recent articles and theories on AS and over treatment are very confusing and frustrating for us younger guys (in our 50’s) with low grade PCa ( 1 core out of 12, Gleason 6, PSA<10).  Some reports state age doesn’t matter others contradict  this statement. Oh What To Do!

Age (life expectancy, actually) is not a contra-indication for Active Surveillance.  It simply means that your likelihood of deferred treatment is higher than someone with shorter life expectancy.  Those treated with deferred treatment in a well-run AS program have the same outcomes as those treated immediately.

For your assistance, to[o]young, the American Urological Association (AUA) publishes a free online document titled "Guideline for the Management of Clinically Localized Prostate Cancer" (LINK).  (Close to 90% of all new diagnosis are "Clinically Localized.")

In my own case, I closely followed the recommendation of this Guideline that each patient closely examine four facts/dimensions about themselves in order to make the most personally appropriate treatment decision:  my cancer's characteristics, my overall health, my life expectancy, and my personality/values.

It should not be so bewildering that a very-informed treatment decision might have been different than someone else's, because my (or anyone's) four dimensions (above) are different from everyone else.

I would encourage that newcomers—and especially low-risk newcomers—make a very-informed decision about treatment (including deferred treatment/Active Surveillance, which has been shown to have the highest QoL).  The Guideline mentioned above is an excellent tool created specifically to assist newcomers in the decision.

  Casey said... A few of the HW readers have pointed out to me that I rarely post my own personal opinions; rather, most of what I post is merely a copy/paste or helpful interpretation of emerging findings or thought from the medical community of PC experts.   This is true, as I often find that others have been able to pull-together words around the complex subtleties of PC better than I can, and I don’t mind serving as the “messenger” to help provide support for our newcomers on the latest-and-greatest in this rapidly progressing field.   Casey, As a mid forties guy with aggressive PC that requires aggressive treatments, I sometimes get upset at the seemingly endless posts on overtreatment.  But this is more of a personal thing with me.  I think the normal G6, low cancer volume, older guy would be wise to weigh out all the options and seriously consider not going overboard with treatment(s). My anger that I get sometimes is directed more towards not wanting the other extreme (and rare) version of the disease to begin with. That said, I have always liked your posts at HW and I find them very informative.  Keep up the good work.  Thanks, Jerry L.

 Jerry L., thanks for your comment.

In your first sentence, you mentioned that you sometimes get upset (perhaps frustrated?) at the threads discussing overtreatment.  I’ve said before that PC is really like two, or three, different diseases.  When you come to HW, you are looking for the threads that discuss advanced disease (you are T3b, G9) because these are the threads that are most valuable and important to you.  That perspective is very understandable.  I hope I’m not giving you this information for the first time, but the reality is that you drew a short straw…when you span the population of men diagnosed with PC, there are very few men diagnosed if G9, and especially in their mid-forties.  You’ve probably already seen these statistics and asked, “why me?”  I wouldn’t blame you.  On the plus side, though, I think that 2012 has already been a very exciting year for progress in treating advanced cases, and there have (appropriately) been many threads on these new treatments.

But do also keep in mind the "other" disease which currently goes by the same name, “prostate cancer;” the low-risk variety.  There are perhaps 20-times as many brothers diagnosed with low-risk than high-risk PC, so while the discussions on low-risk overtreatment don’t impact you, they do impact, and are appropriate, for a lot of other men who are newly diagnosed and may be coming here to HW looking for knowledge, experience and support.

Many doctors and pathologists have suggested that a different name be given to low-risk PC so that both patients and doctors can more effectively manage the vast differences between high- and low-risk cases.  What do you think of this idea??

 

 

 

edit:  fixed typo

Post Edited (Casey59) : 7/24/2012 3:29:34 PM (GMT-6)

Phenom, I'm walking out the door now for a concert tonight, but rough order of magnitude is low=50%, intermediate=40%, high=10%.

tallguy, Your post helps to strengthen our resolve (my resolve, and perhaps your resolve, too) for HW to be a source of valuable information for PC-newcomers * .   While this thread is not about re-examining the water that’s already passed over the dam in your case or anyone else’s case, it is for “the next guy through the door” here at HW who was just diagnosed yesterday with low-risk PC. One of the “rules of thumb” given to newcomers is to educate themselves about PC, and one of the things that those who drink from the firehose of information learn quickly is that prostate cancer is really like two, or perhaps three, different diseases, and that the most appropriate treatment for the different diseases is not a one-size-fits-all .   Not all newcomers know this “rule of thumb” on day #1.   HW can be a valuable resource to help men come up the learning curve quickly on similar types of good information about PC.  HW should not be anyone’s sole source of information, but men like Mike Scott (see original post in this thread) and men like us who have been to the “school of hard knocks” can provide meaningful inputs to the newly diagnosed. tallguy, what have your chief “lessons learned” been since your were first diagnosed in 2008 with PC which you would like to be sure to pass on to newcomers…?     * HW is a great support site for newcomers, but also serves the community of PC patients who seek follow-up therapies, and support for those dealing with side effects from treatment.   I don’t mean to imply that the site is only for newcomers.

tallguy, what have your chief “lessons learned” been since your were first diagnosed in 2008 with PC which you would like to be sure to pass on to newcomers…? I'm going to answer that for myself: - Get annual PSAs and DREs starting at least by age 40. -  I learned that a PSA of 4 going into a biopsy means absolutely nothing.  It could mean a small amount of slow growing cancer.  Or, it cold mean a lot of aggressive cancer.  Or, somewhere in between.  Only through biopsy will you be given more information. - Generally, gleason 6s with low volume should take their time and seriously consider AS. - Gererally, gleason 7s+ with med. volume should take less time and weigh out all options.  - I learned that I should have been even more aggressive. - I learned that I should have went to see Dr. Myers sooner. - Read all your records from your doctor visits and scans.  You might learn something that your doctor(s) didn't tell you.   Casey---I'm still thinking about the different names for different types of PC....      

It's possible that all three were being "honest".

The other two were specialists knowing details of your specific condition though.

What we DONT know is, what if you had waited 6 months, and during that time something intensified, travelled elsewhere in your body, only to be found years later...

I guess what i'm saying is, we (me included) perhaps shouldnt be so quick to ignore all the potential future problems we might have prevented - by having the treatment we chose.

We cant prove the negative... but many of us destroyed the majority, if not all, of the pca in our bodies. . so we subjected ourselves to serious treatment for a legitimate reason.

Well Casey, we ALSO know that for SOME men.. it wasnt there, then it was there, then it killed them. Or will.

The best news most cancer patients hear is "thank god we caught it in time".. That may be a slower journey when referring to PCA, but I think it still holds true.

about 28,170 men will die of prostate cancer in the us in 2012. http://www.cancer.org/Cancer/ProstateCancer/DetailedGuide/prostate-cancer-key-statistics