I’m pleased that this thread has generally remained focused on the original topic of things I wish I knew, or that my doctor had told me at the time my baseline PSA test was given. It dipped a little into the other topic of “PSA screening,” but generally steered clear. Thanks…and compiler, you owe some $$.
The
first thing identified here in this thread were some of the real and meaningful numbers behind the PC environment today, listed in the original posting. There may be more numbers which may be meaningful, but nobody contributed any new ones. I know that Paul65 put together a recent addition to the “Newly diagnosed…” sticky thread with some similar facts...the numbers here are in a similar spirit and should probably be added to that sticky. For those who may recall Paul65’s original objective/purpose in creating that post, we see how folks like newly diagnosed Tedswife realizes (in this thread) the benefit from that big picture perspective.
The
second thing I wish I knew which has already been captured in this thread is about
the PC overtreatment controversy. I don’t know if my doctor just seemed to have blinders on to this reality, or had his head in the sand about
what was going on around him, but this is another area I wish I was better informed about
. When I posted this yesterday, I had forgotten that this, too, already existed in the “Newly diagnosed…” thread. A poll was done a few years ago, and overwhelmingly the members of HW/PC felt that newcomers should know about
the PC overtreatment epidemic of the 21st century. Sadly, the tremendous advances in life-extending drugs for advanced PC patients SHOULD be the major story of the 21st century, but so far the PC overtreatment has lingered over the era as a dark cloud...the era of the "prostate snatchers!"
So here I’ll add the
third thing I wish I knew before getting my PSA baseline…
what the heck Active Surveillance is, and why it’s so important for such a large number of men with prostate cancer. It's not appropriate for everyone with PC, but it is for a very large percentage of men. Obviously, men need to understand the concept of active surveillance BEFORE their PSA test for the reasons already stated—because of the “big-‘C’” freak-out factor that everyone experiences! Luckily, I’ve previously crafted a list of four important-to-know fundamentals of AS in an earlier post which I will just copy/paste here:
ACTIVE SURVEILLANCE FUNDAMENTAL #1:
AS is only for well-selected men diagnosed with PC. This is why “Step #1” for newly diagnosed men is to understand your risk category (see “Newly diagnosed…” thread). AS is not for men with high risk cases. Intermediate risk…maybe. This category has been split into two groups: 4+3 unfavorable intermediate risk cases, and 3+4 favorable intermediate risk cases, with other case characteristics also weighing-in. A number of AS programs have been including favorable intermediate risk cases. Low risk cases are the obvious candidates, and Johns Hopkins has had strict guidelines (although they have relaxed their AS criteria a couple years ago).
AS FUNDAMENTAL #2: Despite the limitation of being "well-selected" in #1, above,
a huge percentage of newly diagnosed men are suitable for Active Surveillance as a first-line management strategy. Some AS programs are more restrictive than others, and there is currently no universally accepted formal protocol for AS entry, monitoring, or exit. Clinicians individually tailor a program of care to each individual case but based on common foundations. Using contemporary data of newly diagnosed cases in the US, somewhere between 40% and 67% of new PC cases are likely eligible for Active Surveillance, based on more and less restrictive program criteria.
AS FUNDAMENTAL #3:
Some men who originally qualify for AS end up moving onward at a later date to a deferred treatment if signs indicate degradation in case characteristics. These men with deferred treatment are also “AS success stories!” (Please study and understand this PC Infolink article if you are confused by that statement: prostatecancerinfolink.net/2010/10/19/understanding-your-clinicians-mindset-about
-active-surveillance/) The program worked for them, too, by showing them if and when treatment was appropriate. Complementary research has demonstrated that men on AS who move to deferred treatments have essentially the same outcome as those who sought immediate treatment.
AS FUNDAMENTAL #4:
Ongoing monitoring is important to the continued success of AS programs and men enrolled in AS programs. Annual PSA blood tests are the norm. In the past, on-going AS cases have follow-up biopsies (after the 2nd, confirmatory biopsy) on an every 18-24 month basis (typically), depending on the program. In the current decade, mp-MRIs have been found to be superior to the old standard ultrasonic-guided needle biopsy, and most AS programs now at least intersperse mp-MRIs with needle biopsies.
https://www.healingwell.com/community/default.aspx?f=35&m=3494710
Together, I think these are candidates for addition to the "Newly diagnosed..." thread.
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A couple things from past posts to clear up:
1. Ralphinaz said he thought the AAFP, the family physicians who do more PSA testing than any other group, had adopted a policy of not PSA testing unless there were already advanced symptoms. That may be outdated info because to the contrary the AAFP is a big supporter of what we are discussing in this thread…the discussions which educate men about
PC prior to PSA baselining/testing. AAFP is a co-sponsor, with the Internal Medicine docs, of the “Choose Wisely” initiative which is centered on physician/patient dialogue. With direct regard to PSA testing, the “Choose Wisely” specifically stresses these discussions: “Physicians should not offer or order PSA screening unless they are prepared to engage in shared decision making that enables an informed choice by patients.” In other words, the “routine” (ie., check the box/no discussion) or football stadium screening programs should be replaced with education and dialogue in a proper setting. AAFP supports PSA testing in this situation…when the education precedes the testing. Just about
every medical society has a similar statement...don't just check the box and be silent; have a discussion.
2. BillyBob commented about
mortality improvement in PC, which has been largely driven by the breakthroughs in both HT and chemo treatments over the last 20+ years, not be screening. The era of advanced PC treatment hasn’t cured PC, but thousands of men have benefited by the extension of life which has blossomed in the last generation. Like I said earlier, unfortunately the positive story behind these improvements in the era has been overshadowed by the negative perspectives of PC overtreatment.
Post Edited (JackH) : 10/24/2015 2:27:26 PM (GMT-6)