Is AS deciding not to decide?

Is AS Deciding not to decide?
I am new at this PC adventure and in the early decision-making state. I read a great deal, am active on a few forums, have a great Doc and feel well informed. Yesterday on a forum a Gentleman shared his AS story and the shock of going from G6 to G9 in five years. A great discussion in the thread occurred.
To say it set me on my heels is not an overstatement. I have been through the typical emotional wringer many of us go through in the early days of diagnosis. I had become comfortable with following AS at Yale. I meet with my Uro today, hopefully, to get Decipher results and create a short-term plan.
And the post mentioned has me full of doubt. I also had this thought that my fear of intervention (which I believe will happen at some point) is really about the SEs of intervention. So, the bet I am making is it worth delaying SEs for some period and risking advanced disease and possibly metastasis?
At the PCRI conference, I met a big group of men on AS who were very happy. A few who had interventions after AS for many years and were pleased with their decision. I believe there is great value in AS for many. Am I one of them is the key question?
As I reflect on the many tough decisions I have made in my life, none seem as difficult as this one. The impreciseness of the tools we have, the complexity of this stupid little gland, and the bias we all have makes this a most difficult decision.
What do I know? Well I know I have positive cores with second opinion grading. I don’t know if there is a worst disease that the biopsy missed but probability wise there is a greater chance that I have worse than better cancer. More cases are upgraded than downgraded. I also know many guys who have had /are having a good run at AS and even those who intervened were able to keep the window of survivability open.
I am getting clearer, for me, that AS is a good strategy that really is delayed intervention for many. In the recent Netherlands study, the following was found:
https://prostatecancerinfolink.net/2017/03/28/15-year-metastasis-free-survival-in-men-on-active-surveillance-in-the-netherlands/
Here is what Verbeek et al. reported in London:
• Of the 900 eligible patients,
o 223 (24.8 percent) were initially placed on active surveillance.
o 312 (34.7 percent) elected immediate radiation therapy.
o 365 (40.6 percent) elected immediate radical prostatectomy.
• The 15-year rates of metastasis-free survival were
o 96.9 percent for the men initially placed on active surveillance.
o 96.6 percent for the men treated with immediate radiation therapy.
o 97.7 percent for the men treated with immediate radical prostatectomy.
• The 15-year rates of prostate cancer-specific survival were
o 97.2 percent for the men initially placed on active surveillance.
o 97.5 percent for the men treated with immediate radiation therapy.
o 98.5 percent for the men treated with immediate radical prostatectomy.
• There were no statistically significant differences between the groups of patients with regard to either metastasis-free or prostate cancer-specific survival.
Well, I am a bit lost as to my next steps. I do trust my doc and today will have a gut discussion. I am confident the path will be clearer later today and my wife and I can decide the best course for us. I am open to input for all.

Well time to go for a run and let the spirits guide me! Be well all! Denis

You, sir, have come across the golden nugget of Active Surveillance. Not everyone can/does understand this...or many men understand this concept too late. The pure emotion of "the big-C word" can be difficult to overcome. But I think you have got one foot into the door of knowledge.

Allow me to re-state for you what the data you quoted above says: If you are in the well selected favorable-risk category to begin with, it makes NO DIFFERENCE in cancer outcomes whether you pursue immediate treatment (any variety) or to pursue Active Surveillance. NO DIFFERENCE. That's just another way to say the exact same thing you quoted. I’m going to re-state it again, below, in different terms that I'm fairly confident you’ve also already heard elsewhere but possibly didn't understand in this light...but let this "NO DIFFERENCE" point sink in for a minute.

While it sinks in, I’ll take a paragraph to address your question about whether AS is “no decision.” No. Active surveillance is a proactive, prospective therapy to measure the pace of the disease progression (or lack thereof) by regular monitoring AND instituting treatment based on pre-defined change in the monitoring results. It is deferring treatment with curative intent until treatment is needed…if it is ever needed. For men in your situation, over the long term, aggressive treatment is ultimately needed about 50% of the time, but more importantly it is NOT needed about 50% of the time. But as you can see, those who move to treatment have the same cancer control success rates as those who sought immediate treatment. OK, that answers your “is AS ‘no decision’” question…and I believe I’m not telling you anything you haven’t already read or been told…but maybe it is crystalizing more.

Now, back to the results you’ve posted (and there have been several studies from US and others with the same conclusions as you quoted, above)…I’m going to re-state the study's results in yet another way, which again, I believe you’ve already heard and may only now be crystallizing in your base of knowledge.

First, I'll ask you to digest this important point: Active surveillance DOES NOT guarantee that your cancer will NOT progress and that you will never die of PC. It is ABSOLUTELY NOT A GUARNATEE. It does progress in a very small number of men. Even “well selected” men. But guess what…”well selected” men who choose immediate treatment instead of AS are also not guaranteed that their cancer will not progress and that they will not die of PC. It does progress in a very small number of those men, too. And guess what…progression/death happens at the same rate in both groups (check the data you posted for the rates).

There is a very small percentage of men in the “well selected” category who go on AS will ultimately progress and die (even after they do pursue deferred treatment), and a similar very small percentage of the same cohort of men who choose immediate treatment who will have exactly the same outcome. It doesn’t matter. These cases will create the anecdotal cases of men—very small numbers of men—who started out with favorable-risk cases but unfavorably progressed...some will have pursued immediate treatment, others will have pursued AS. Of course, these anecdotal cases make us uneasy, but their small rates of occurrence are the same, immediate treatment or deferred treatment.

OK. I’ll say it again in another way that you have also heard before, but perhaps didn’t understand in the same way as you might understand it now. For the “well selected” group of favorable-risk men, there is no benefit to immediate treatment. No benefit.

Here's how you wrote it:

Subdenis said...
There were no statistically significant differences between the groups of patients with regard to either metastasis-free or prostate cancer-specific survival.

Let that sink in.

Have a good appointment with your doctor…he sounds like someone who will support you making your own informed (rather than purely emotional) decision.

-Norm

Post Edited (NKinney) : 9/25/2017 9:17:18 AM (GMT-6)

Hope what a great post. I agree with everything you said. Had a great visit with my doc. We had scheduled PSA screenings, confirmation MP MRI at Yale and then confirmation biopsy.

My doc (Dr. Leapman) is amazing at explaining with compassion and expertise. Decipher test results were not in yet. I came away feeling good about my decision to pursue AS.

Thanks Denis

I have seen some guys here say they are on active surveillance while they are trying to decide on a treatment option. To me, that's not true AS, rather they're just taking an extended period of time to assess their options, which I think is a smart hing to do.

True AS is putting an active program into place and that, in fact, is your treatment. Hopefully, it's your treatment forever, but if it's not at least you've bought yourself some SE-free years.