Always an interesting thread when the subject of treatment or not comes up. Of course, "doing nothing" is hardly a sensible choice, and there are JH studies showing that choosing AS does not increase the mortality rates for properly selected and monitored men who later needed treatment. Still, there are often traces of defensiveness, preaching, and Monday morning quarterbacking in these discussions. I'm not innocent here either. Until we have the technology to predict the course of our disease, we have to accept that we are all guessing and playing the odds with our respective choices.

Over and over again, the HW/PC "vets" as I like to call us—those who have stuck around for a while and learned a lot about many aspects of the disease and advocate for continuous improvements in PC care—we see lessons re-learned and re-learned. When old topics become new topics, there are often posts from the past which can be re-posted to help the newcomers, and those who may read this thread in the future.


Gerry/duke68's original post which has now been re-titled "Important for men on AS to continue to follow up with their tests" has triggered just such an opportunity. In September 2015, several HW/PC members collaborated on creating a list of AS FUNDAMENTALS to help newcomers "kickstart" their PC education. This list was primarily created for men with clinically low-risk PC because initial AS (Active Surveillance) is the primary recommended approach. This site can be valuable in getting such fundamental material out to newcomers because it is widely recognized that emotions tend to motivate quick treatment decisions which fail to allow time for data-based decision making. PC care providers recognize that TIME for low-risk men is an essential element to making the best long-term decision on treatment approaches...it takes TIME to educate the patient on the data and results; sometimes emotions do not allow time, so our opportunity to intervene is short.

Here's what we published in September. The #4 item speaks directly to the original posting...it is important for men on AS to continue to follow up on their tests...

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.

These were originally posted in the thread titled "Active Surveillance Update - 99.9 Percent Will not Die from Prostate Cancer" which can be found here:
www.healingwell.com/community/default.aspx?f=35&m=3487697

Post Edited (JackH) : 4/14/2016 7:36:32 AM (GMT-6)

Dan, the history of Johns Hopkins AS program has far better results than that.

https://prostatecancerinfolink.net/2015/09/01/new-data-from-johns-hopkins-on-outcomes-after-active-surveillance/

Dan0 said...
Hi all,
I don't post often but I do read the forum frequently. I first want to say that I am apparently an AS success story (time will tell, but I am very optimistic). I completely agree that AS should be strongly considered for any man who qualifies.

Dan0, thanks for your post, which reads like a "checklist" for the AS FUNDAMENTALS post, above. You are, indeed, one of the successes of AS, having moved successfully to treatment after 3.5 years when signs indicated you should move. Congratulations!

Dan0 said...
I do think that sometimes the success of AS studies is used to infer that low grade PC is indolent, and does not progress or metastasize, and perhaps should not be considered PC (G6).
I do not think the studies support that philosophy.

My observation is that these two items are moving in opposite directions. The momentum for re-naming low-risk PC something else that doesn't have the word "cancer" is waning; I haven't heard anyone new suggesting this in several years. On the other hand, in the last several years the upswing in AS for favorable-risk men has been dramatic, and now approaches 75% of eligible men in many areas. I think men are getting better educated by their urologists on the strong merits of AS, but the bigger driver is that the surgeons are getting "shamed" by their peers for low-risk patients who appear to be rushed into quick, aggressive (over-)treatment.

Dan0 said...
Another long term (30 years) study (referenced by Klotz) by M Popiolek suggest that
overall PC mortality (in untreated low risk patients) is 11% at 15 years and 28% at 20 years. That is far from zero.

You sound like you are familiar with this study, but you didn't mention the important differentiator that the men in the Popiolek study were on Watchful Waiting, and not on Active Surveillance. These are, of course, VERY different. Importantly, the WW men were not offered delayed definitive intervention, which more than explains the higher PC-specific mortality compared to cohorts of AS programs.



In your 3.5 years, Dan0, there were probably considerable cycles-of-improvement in treatment care; the pace of change is dramatic. Imagine how many cycles-of-improvement take place for men on AS for 10- or 15-years. A good way to think about it is to imagine having been treated 15 years ago versus today. As stated in the AS FUNDAMENTALS list, not everyone is fortunate enough to remain on AS for the rest of their lives...although (as you also point out) many are.

Post Edited (JackH) : 4/15/2016 9:16:50 AM (GMT-6)