Active Surveillance Update - 99.9 Percent Will not Die from Prostate Cancer

The way this thread is rolling, it's getting ever more interesting. I would suggest that men who would otherwise qualify for AS don't go for it for one or more of the following reasons. I offer no percentages of how it works out.

1. Many don't do it because they don't know about it. Some don't get told about it, others get told in passing and don't get enough information.
2. Others don't do it because they make a choice about their own situation and their ability to handle it emotionally or psychologically.
3. Still others don't do it because they make a choice to actively seek surgery or radiation instead of AS for other reasons. Not out of ignorance, or being rushed, or anything else.

Group 1 is where I believe the problem lies. Those in groups 2 and 3 don't need to be told that they screwed up.

Jack, I understand your points. And I know that there is much data to support AS being an option that has good outcomes. I have to say, I still think you are discounting the psychological effect that a cancer diagnosis has on so many people. Ip from a personal perspective, being a G6 on biopsy, all the data in the world couldn't get me to feel at peace being on AS. Not saying its logical. Just saying its how I'm wired. I know myself. And I have no scientific data to prove it, but I really don't think I'm an outlier on this.

I shouldn't say you are discounting the psychological effect", rather I should say you are overestimating the ability of the human psyche to overcome the hurdle of just "wanting the thing out" Whether it makes sense or not.

I can tell you, that there is little doubt in my mind, that had I chosen AS, which Dr Mark Scholz recommended pending an MRI and Oncogene test, my quality of life would have been significantly worse than it has been, at least thus far, in the 8 months since my surgery.

I am not disputing, but rather agreeing with you, that AS is a viable option for those qualified, and makes sense for many. But it doesn't make sense for ALL that are qualified, for reasons that sometimes aren't given enough attention

Pratoman, your decision was right for you, and your post-op experience has been optimal. I'm happy to read the posts of your recovery.

And, you know the full extent of your cancer, and have that peace of mind. For me, the future is unknown, even if the odds are somewhat favorable. But, being a little older and having outlived all the men in my family, I live in the moment, and fully appreciate that many men would, very responsibly, not share my viewpoint.

I want to add my experience in response to the statement made by Dr. Klotz that men on AS frequently were "ebullient" after being on AS for a few years. In my case, my "ebullence" came about after Dr. Jonathan Epstein downgraded my Gleason score from 7 to 6. I was adamant about avoiding aggressive treatment even if my Gleason score was 7 IF my PSA score remained close to 1; however, when my Gleason score became a 6, it gave me the breathing room to keep doing AS even if my PSA started to increase. The euphoria I experienced has managed to sustain itself even 3 years later.

Pratoman said...
But as you note, that cannot happen until there is a really definitive way, not with 95% surety but with 100% or 99.5% , to ackmpnowledge the fact that there are never absolute guarantees, to determine which PCs are truly indolent.

Did I say that?

You'd have to show me, because I don't think I would have said that.

I wouldn't have said that because I don't believe that.

Actually, the sentence fragments you wrote are a little confusing (it's a little late; that can be forgiven), but I don't think I would have said what I think you meant to write.

I don't think I would have said that because that sounds like someone who doesn't understand AS.

AS doesn't guarantee you will have an indolent tumor forever. That's not what AS is all about.

AS means validating the stability of one's low grade tumor over time, and eventually moving safely to deferred treatment for the subset of men who show indications that treatment is appropriate.

Understanding AS means understanding that the cancer outcomes for those with similar low risk characteristics who undergo immediate treatment is no better or worse than those who follow AS. Possible future upgrades notwithstanding.

Sorry if I somehow, somewhere left a different impression. Where/when did I do that? Please let me know, and I'll try to go back and correct it. Thanks!

It's difficult to engage in conversations about overtreatment and AS with men who had favorable risk cases and have already been aggressively treated for reasons I have already commented on in this thread.

I feel that I was overtreated, and I don't want to hear that I screwed up...but when I look back in hindsight today, I understand that I simply was not exposed to good information for making the best decision. I can't change that for me, but I can help the next (low risk) brother through the door who sounds like he's also got the fear of the "big 'C'" in his eyes.

In my case, and probably a lot of others like mine, I thought I had done thorough "due diligence." But in reality, all I had looked at (albeit thoroughly) was the set of aggressive treatments. My so-called "due diligence" was incomplete. I never looked seriously, and nobody ever suggested that I look at active surveillance.

The information on patient education was weaker then. It was not clear to me that I shouldn't panic about a small amount of what appeared to be indolent "cancer." And nobody told me.

Today, the path to reduced overtreatment is clearly through patient education about the disease and about AS for favorable risk men. My perspective is to focus on the future, not the past. The past is what it is. I hope you can adopt a similar perspective, and think about how your experiences can help others today and tomorrow.

This may not solve world peace, but if I had understood the four AS FUNDAMENTALS at a site like HW/PC (flip back a few posts in this same thread) when I was newly diagnosed with favorable-risk PC, I might have been a bit smarter in my "due diligence" approach, and things for me might have turned out differently. cmetalman, what's your thought on that for your case?

Post Edited (JackH) : 9/4/2015 7:06:36 AM (GMT-6)

JackH, I think you are simply an aggressive fighter against over treatment, and I believe you have a good cause. And the facts are simple at least regarding outcome: Regardless of what % ended up needing treatment of whatever kind 1 or 2 or 5 years down the road, 99+% of those who started with AS had no PC advancement 15 years later. I just don't see how they could have improved on those results if some or all of them had been given immediate curative treatment. Still alive and with no clinical problems from the PC that is within you is about a good as it gets. In fact, it is a lot better IMO than still alive, no clinical problems from PC, but with some major SEs caused by the treatment, which is what some of us end up with.

I have been reading this thread with much interest. Now personally, over treatment is virtually impossible in my situation, and AS isn't even a remote option, so take my opinion for what it's worth, basically it and 7 bucks will get you a foo foo coffee from Starbucks.

I haven't done near as much research as others, mainly because I'm in the infant stages of my battle. But, here is my take.

I think AS should be a viable option, and one that is explored more often. With that said, I'm not sure that beating the drum and yelling AS is the best from the mountain tops is the best approach. As previously stated, the decisions of treatment are incredibly personal, and many people don't like hearing they were wrong in their approach. Besides, who are we to say that their decisions were wrong based off of reading a snippet of their diagnosis from their signature?

What i think we should be pushing is more general, and is just education of ALL treatments, and a general overall knowledge of PC in general, including but not limited to: Gleason scores, biopsy options, PSA, staging, etc.... Obviously, this education needs to occur at the patient level, but that can be difficult. What happens is someone suddenly is told they have PC, which puts their psyche into overdrive. It's difficult to properly educate someone under this mindset, it can be done with some, but being able to reach this demographic will be tough. In a perfect world, every man over the age of 40 would take the initiative to educate themselves on this topic, but again, that's somewhat realistic, as humans by default will say, that doesn't matter to me, I don't have PC. So that leaves the medical profession. Educating GP's, Urologists, RO's and even Medical Oncologist. The issue with this is the arrogance of medical professionals, and the self absorption. Too man in these professions will only push for their specialty. I realize this is a blanket statement, and a bit cynical, as there are many very good doctors out there, but I used it for dramatic effect.

I normally don't like responding, unless I can offer a solution, but I'm not sure what it is in this case. My gut tells me education of the patients is the key. They are the ones that truly own the power and ultimately their care path should be their decision, with the opinion of many different medical professionals. So instead of just promoting one specific treatment, let's push for education of all treatments. Each treatment option has their own plus and negatives. What I've learned is that this cancer attacks no two people the same, so every person that has to deal with it, is a unique treatment case.

In the end, we all want the same thing, and i just want to see everyone continue their fight, supporting and educating the others that come to the board in a meaningful and constructive manner.

As Travis Tritt says.... "It's a great day to be alive, I know the sun's still shinin when I close my eyes"

Thanks for your comment/support, jpenn44.


May I please offer this for your consideration? You said:

jpenn44 said...

What i think we should be pushing is more general, and (1)is just education of ALL treatments, and (2)a general overall knowledge of PC in general, including but not limited to...

A part of the problem from the past has been the one-size-fits-all approach. Frankly, with my favorable-risk case, I didn't need to learn about chemo. Similarly, someone presenting with a PSA of 5,000ng/mL doesn't need to learn about AS. In my own case, I learned about everything EXCEPT active surveillance. My case was handled in a one-size-fits-all perspective, not individually tailored to my set of circumstances.

Other than this minor tweak, your comment aligns closely with my posting earlier today...don't you agree?:

JackH said...

Today, the path to reduced overtreatment is clearly through patient education about the disease and about AS for favorable risk men.

Hi Jack.... I agree with your comments, UNLESS, that patient is someone that wants to become a spokesman for the disease. In that case, I think they need to educate themselves. That said, that is oranges compared to the apples we were talking about.

Personally, I want to learn about AS because I have a general quest for knowledge, and I want to be able to speak intelligently to anyone that asks me about PC, as I am certain you are.

The one size fits all doesn't work. I've actually thrown around the idea of creating a "flow chart" for PC, but haven't had the time and more important I don't have the full concept visualized yet.

@ cmetalman. ..Thanks for sharing your story. It helps me when I can know where others are coming from. In no way was i asking in order to know whether I should be judgemental or not. I ask for informational purposes only. It seems I need information, facts, for my own decision making process....from as many sources as possible.

@ JackH....Regrets is a fear of mine. I appreciate your dissemination of information.

Post Edited (island time) : 9/4/2015 9:06:01 AM (GMT-6)

We have already come a long way in educating people. If this were posted 6 years ago on this board the poster would have been run off like so many others that were posting about AS.
It is very encouraging that when any new member with G6 posts now he is encouraged to look at AS as an alternative. This is a huge leap from where were were just 4 or 5 years ago.
Urologists, who are usually the first contact at DX, are also now including AS as an option when discussing treatment. Again a huge leap from the handful of doctors that would have recommended it 5 years ago. 7 years ago when I was first Dxed with a <5% G6, my second opinion from Dr Scholz said we would never treat that type of cancer, but unfortunately you have a much more serious cancer that we just haven't found yet. That was my first knowledge of what AS really was, and that was after 10 years of seeing doctors about rising psa. We have made tremendous progress in education new patients since then.