A few key FUNDAMENTALS of Active Surveillance—PC Patient Education 101

Hello Jack

This certainly lays out AS in clear and understandable terms to me, and I'm a newb...

One thing that struck me in another thread discussing AS was the observation that even men who qualify 'clinically' may still not be well suited to the program. It was noted, for example, that I seem to have a suitable mindset, while other perfectly rational folks would go insane; feeling that they are a ticking time-bomb who would prefer the "get this out of me" approach. Neither are wrong and one size doesn't fit all.

I wonder if it is worth acknowledging this variance; my thinking being that anyone considering AS does need to look beyond the inclusion criteria/success stats and consider their own psyche/sanity as (from that other thread) this comes through loud and clear as a variable when people start discussing AS.

I'm happy to try and write that paragraph but I'm not really qualified... (other than being human and male); others are better placed.

Paul

I never could understand the not wired "Get it out of me mode stat!!!" mindset that many profess to having. For as time goes by there's little difference IMHO between AS and the anxiety of all those with regularly scheduled PSA checks post treatment experience. Other than those on AS are still living normal lives without side effects. In the mean time medical science progresses in case they ever do need future treatment.

Ziggy, it's not required that you understand why some people can't handle doing AS, just that you accept that some men don't feel they are cut out for it (pun intended). In the end, it's a personal decision by a particular man and his family, and passing judgment on him is singularly unhelpful.

To the OP, this is a great statement. I think particularly that expansion of the section on 'finding an AS program and physicians who will support you in it' is needed. Access to programs includes the actual ability to physically participate. For some, the idea of having to take a full day off work once every 3 or 6 months to check in at the program site is too much. For others, it's no biggie. As tools like Mp-MRI get more widespread then it will get easier.

I like Zig's point. I was never a candidate for AS. But if I was, I think knowing 3 month testing would be required with either choice, creating the same amount of anxiety, I would be more comfortable choosing AS over surgery. Why jump into the possible SE of surgery if you can wait? Of course, can you really wait is the question. I never had that choice so it's hard to say what my ultimate decision would've been. But I was obviously naïve about the required lifetime testing. That part was never conveyed to me before surgery, or I never fully understood the gravity.

Wilderness, thank you. I have noticed, from time to time, highly loaded language used by those who advocate for more AS (a worthy goal), when others fail to share their enthusiasm. I understand the high level of concern about the so-called overtreatment epidemic. However, throwing all who chose against AS into the dumpster full of the overtreated due to zealous surgeons who prey on the fears of the ignorant is going to turn a lot of people off.

I agree 100% with Halbert and Wilderness.
I understand the post was made with all good intentions for the purpose of helping guys who have not yet been treated. But to refer to guys who have chosen treatment and call their decisions Fear and knee jerk reactions to the C word, is a little annoying, frankly. Again, i know the post was made with good intentions.

I honestly envy guys who can approach a cancer diagnosis with logic. I can't. Wish i could, but i can't and those who can, do not understand what it means to walk in my shoes.
Whether intentional or not these comments do come off as judgemental. I don't think there is any place for judgement of others decisions, here.

Said with all due respect

Thanks everyone who chose to contribute to the possible improvement of this thread.   A good posting which helps explain the FUNDAMENTALS of Active Surveillance to newcomers who may be eligible candidates may prove to be an incredibly valuable contribution to HW/PC.   As others have said, it may make a great addition to the existing “Newly diagnosed…” thread.   Thanks again.   ShinytopPC, I want to particularly thank you for your comment because you are one of the real examples (so was I, by the way) of how this thread might help others in the future.   Paraphrasing your post, after diagnosis your urologist said you should “start your PC education,” but then he didn’t tell you about AS.   You found out about AS somewhere else on your own (perhaps at a site like HW/PC) and asked him about it, at which point he was fully onboard and supportive.     Discussion 1 Several comments were centered around current members of HW/PC who may feel personally insulted about their own past choice to pursue an aggressive treatment although they might have been a candidate for AS because some of the important messages about AS are intended to help newcomers avoid rash decisions .     The clear reality is that PC medical professional thought leaders recognize that some men make do make rash PC treatment decisions for low-risk cases, often out of a fear which is out-of-proportion to their actual risk.   This is a fact.   It has happened in the past, and is happening today.   Whether you fall into this category from the past or not is not the point— this ain’t about you .   (It’s also not about me, and I DO fall into the rash decision category.)   This conversation is about , and for, someone newly diagnosed.   Someone like ShinytopPC who is looking for information and has NOT already made a treatment decision.   Here’s one of the best passages I’ve read about the psyche which influences newly diagnosed men; this is a reality we need to confront, not avoid or feel insulted by .   Dr Klotz wrote: A diagnosis of cancer often results, at least initially, in “cancer hysteria”—that is, a perfectly understandable reflexive fear of an aggressive life-threatening condition. Historically, a diagnosis of cancer was a death sentence. In Western society at large, the cancer “zeitgeist” is that this disease is dreadful and must be caught early and treated aggressively to avoid what would otherwise be a painful and premature death. This widely shared preconception often leads the patient to make a quick and early decision for treatment, regardless of the risks and benefits. For some cancers this fear is warranted, but for most men with favourable-risk prostate cancer, their condition is far removed from that of a rampaging, aggressive disease. Most men with favourable-risk prostate cancer are not destined to die of their disease, even in the absence of treatment. The task is to identify the subset that harbour more aggressive disease early enough that curative therapy is still a possibility, thereby allowing the others to enjoy improved quality of life, free from the side effects of treatment.   So, can we tell newcomers that they might be able to “ enjoy improved quality of life, free from the side effects of treatment ” if they don’t respond with a “ hysteria, ” yet not have men who might have been in a similar boat be insulted just because they did choose aggressive treatment?   Dr Klotz did not intend to imply that everyone who was overtreated was hysterical; rather, that this is a natural reaction given our culture.   That reaction, however, is largely emotionally–based and has not been supported by data or facts—facts which may require one to engage in thoughtful investigation and “patient education.”   Sitting down and inputting medical variables of known significance and doing the homework involved in the risk assessment of the PC patient is a very crucial step in a logical, rational approach to this disease.  A rash decision often precludes a rational approach.   Bottom line, the wording of the AS FUNDAMENTAL statements will be written in wording recognizable and helpful to the newly diagnosed PC patient who may be a candidate for AS.   Men like ShinytopPC can be our example.       Discussion 2 Several comments provided in support of the notion of adding another AS FUNDAMENTAL on the psychological issues which men aggressively treated confront versus those who pursue AS/deferred treatment.   Good comments on both sides of this.   Unless someone else suggests specific wording, when I have some additional time, I’ll draft another fundamental on this.       Discussion 3 Halbert commented about conveying the widespread availability of AS.   Choosing AS is different than the suggestion, for example, for those who need surgery to find a surgeon who has performed hundreds of procedures.   A major CCC-site is not needed for AS…just a urologist who is open to working with you, and these might often be found at a community level.   I’ll give some thought as to how to incorporate this into one of the existing AS FUNDAMENDALS.     Again, many thanks for the feedback, so far… Post Edited (JackH) : 9/14/2015 11:16:07 AM (GMT-6)

Paul, good summary of the conversation.

I'd like to add a clarification of my thinking. When I read the article summary, not having read the entire published article, it appeared to me that good AS programs include things like access to Mp-MRI and other advanced diagnostic tools. These tools are not universally available, so IF having them is part of being in a "good" AS program (as opposed to the older watchful waiting programs), then time and distance can be issues for some patients.

I think (for me, again) the language criticism was based on some very specific comments made that took the form (no quote) of individuals expressing the opinion that "the only logical choice for low-risk individuals is AS", implying...and saying...that anyone who made a different choice was being illogical and irrational and was rushing into treatment or bullied into it by unethical doctors.

One of the strengths of this forum, unique in my online experience, is that we are very good at supporting each other, regardless of the decisions each other makes. I do not have to agree with anyone's treatment decision to support them in it and to be as supportive as I can be regardless of outcome. I agree, it's one thing to educate and encourage the panicked newbie to do the hard work of research relative to their own situation...and it's vital to do so. In the end, we all walk the last steps alone.