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Gibbs Cancer Center position on AS (Active Surveillance)

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Posted 5/31/2013 6:06 PM (GMT 0)

Purgatory said...
Would like to hear from others here, about what their doctors or clinics are doing about encouraging or promoting AS, that was the real point of starting this thread.

david

I'm not comfortable with active surveillance, even though I unknowingly practiced it for 5 years on my own. It would have probably killed me if I had continued.
Posted 5/31/2013 6:09 PM (GMT 0)
James, I too, was one that had no symptoms whatsoever.

All my DRE's were negative.

Never had had an UTI before

No enlarged prostate

No prostate infections

Never had to get up at night to pee

Only tell-tale sign, was from my very first PSA at age 50, as per my PCP's recommendation, my PSA was always increasing quickly. Started out moving up at least .50 a year, then it would double, then triple, and in the final one just prior to my surgery, it had nearly quadrupled from the year before.

If it were not for these PSA tests, I would still be clueless.

david
Posted 5/31/2013 6:14 PM (GMT 0)
Of course, being in denial is not the same as practicing AS, lol, but I know you didn't mean that. And I realize that there are men whose mind-set wouldn't make them comfortable doing AS, but even then, if they were properly educated on it in advanced, and could see how AS could help them preserve a better quality of life for them, it might no seem so bad.

I wonder how some men are feeling now, that had AS qualified cancers, but chose an invasive treatment, and now a year or two later, still dealing with incontinence and/or serious ED issues. No one would be expected to admit that they were over-treated, understood, but in their heart of hearts. wonder how many wish they could go back in time and give AS a chance.

As JohnT, in particular, has pointed out many times, even if you have to come off AS in a few years, generally all your primary treatment options are still there for you. In my mind, it would be a win-win thing.

david
Posted 5/31/2013 7:52 PM (GMT 0)
Purg

I'll chime in on how I feel for a guy who was AS qualified, I am still very satisfied with my decision. I lot of thought went into my decision to get treated; I did have a head start in the research though because my Dad had been dx 5 years earlier. I considered all options including AS and made a personal decision at that time on what was best for my family and for me.

When I looked at AS I weight the odds of needing treatment sometime down the road, with Dad and two of his brothers having prostate cancer (one died of PC) I figured I would eventually need to something. I knew that with what I was Dx with at that time was not going to kill me, but had a chance to somewhat affect my health in the future, and I knew all the statistics about the success rates and chances of side effects with each treatment. So if I was going to be on AS for 5 to 7 years, then get treated and wait another 5 years before hopefully be in the clear, that's 12 years of my life dealing with PC. I could handle possibly having a limp willy, I'm not really the neighborhood stud but if I ended up with that SE a little shot of trimix and I might be as good as and 18 year old.

So for me the possibility of dealing with PC for such a long time was a worst QOL issue then what I deduced the risk of side effects of treatment would be, and in my case I lucked out on the SE and fell on the good side of the percentages. The treatment decision for me was the best way to turn the page, finish the chapter and close the book on this darn PC. I am not saying I'm right, I'm not saying other men should think this way but for me it is the path I have chosen. People, groups, studies can put out all the numbers, recommendations and conclusions they want but at the end of the day it’s my personal decision, I have to right to choose what I want and don't want to do, and I alone am responsible for the outcome of my decisions.

I applaud all of you who day after day post to this board in the spirit of helping others. I could not handle having my life consumed by having to talk, discuss and argue every single day on the topic of PC.
Posted 5/31/2013 8:03 PM (GMT 0)
Normek, I shared many of those same exact sentiments.

I think it's the reason some people, mostly AS proponents, want to play games with changing the name of low grade cancer to something else. I think they believe that if we don't consider it cancer we won't use the logic we both did,
Posted 5/31/2013 8:44 PM (GMT 0)
davidg -- the well-respected urological oncologists, and lay people, who are debating the extent to which a cell pattern must deviate from the "norm" before it is properly termed "cancer" are not -- to use your words -- "playing games." There is a serious issue as to where the line is between "cancer" and "not cancer" or "not yet cancer." (Do you think a pathologist who identifies a Gleason Grade 5 (3+2) pattern as "not cancer" is also playing games?) The lines are not so clear, and as far as I know there is no conspiracy.
Posted 5/31/2013 8:48 PM (GMT 0)
Medved, I think they are playing games with a word. Most of them, not all, are AS proponents and it falls right into their agenda. A large percentage of people drop out of AS programs as a result of psychological reasons. It's no secret the AS providers have been looking at changing this perception in orde rot reverse those trends.

We're not talking Gleason 5. Also didn't mention anything about a conspiracy. Think we're done with this and can agree to disagree. bye.
Posted 5/31/2013 9:03 PM (GMT 0)
The fact that some doctors get paid to supervise AS and other doctors get paid to do prostatectomies (and many docs do both) does not change the fact that there is not complete consensus with respect to the line between "cancer" and "not cancer." I think it would be perfectly appropriate for a doctor to disclose that fact to a patient who is considering his options.
Posted 5/31/2013 9:49 PM (GMT 0)
My husband has 3 friends doing AS - one is in a formal program at MSK, one is monitoring himself with PSA's, and one is seeing a local urologist. We don't know anyone who was rushed into treatment for a small amount of G6 cancer. When we interviewed doctors they all mentioned AS, but my husband was not a candidate. My husband would have done AS if he qualified for it.

My husband's surgeon no longer does surgery on G6 men except in certain circumstances - a high volume or large number of cores of cancer, or a young age. I also heard him say that he will no longer operate on older men with G6 cancer.

I attend occasional lectures on PCa and have heard urologists speak about controversy about how AS is practiced. I recently heard a urologist say at a lecture that he is against how AS is practiced at MSK (the formal program in our area). He thinks they do too many biopsies. He does not think biopsies are benign and he will only do repeat biopsies in response to a rising PSA.

The doctors that my husband and I met and the doctors that I have heard lecture are all going in the direction of trying to differentiate those who need treatment from those who don't, and those who need biopsies from those who don't.
Posted 5/31/2013 10:53 PM (GMT 0)
I haven't read any studies on AS, but I'll be a living example.  I was diagnosed withi PCa just over 3 years ago.  I was given the option to do AS.  I was 49 at the time and was told because of my age, I would probably live long enough that I would eventually need treatment.  The question was, when would I need it?  In 5 years, 10 year, 15 years?  My doctor is an expert in the field so I put my trust in him or as I told him, "I'm putting my life in your hands" and went with the AS option.

Now unfortunately my cancer progressed and my prostate and I only got to spend 3 extra lovely years together.  I'm now 6 weeks post Mr Davinci.   Was it worth the gamble?  Only time will tell, but I'm fairly optimistic that I'll be fine, although if I had only known it was only going to be 3 years, I might haven chosen differently, but hey, three is better than zero.  I'll give this little bit of advice if anyone out there decides to choose AS.  It does turn you into a bit of a hypochondriac.

As far as PSA screenings goes, all I know if I hadn't had one, I would be sitting here with a gleason 7 cancer inside me and I would have never have known it.  I never had any symptons, even right up to the surgery. 

What do I think other people should do?  Choose wisely and pick whatever works best for you and you'll always be right.

Posted 6/1/2013 12:43 AM (GMT 0)
norm - based on your strong family history of PC, I think you made the right decision, without a doubt.

davidg - you know I am solidly against this renaming of G6 to a non-cancerous term, I see no merit in that but deception, and if anything, might lead men into a form of denialism. I find it odd, that after telling men for years that your best weapon with PC is knowledge, we now have this new push for hiding the truth from men, sounds so counter productive to me, and again, I question both the wisdom (or lack of) and the real motivation for this change of heart.

bluebird - good post on the subject, thanks

decisions - sorry you had to end your AS, but, you bought 3 years of hopefully good time in the process, hope you have beaten the beast

david in sc
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