Active Surveillance

One problem with active surveillance is the lack of long-term role models. Most "crack" either for psychological or cancer progression reasons. (As I probably will.) Even the proponents, like the fellow who wrote "Invasion of the Prostate Snatchers", often seem to end up on hormone therapy, which has significant side-effects. Would this have been necessary, if they opted for treatment? Mind you from the few reports I've followed, hormone therapy tends to happen after about 15 years of watchful waiting so maybe the trade off is worth it. And perhaps some will never need hormone treatment.

Another thing that pops in my mind. I'm the first one in my family to be diagnosed with prostate cancer. But am I really the first to have it? It's only been recently that they've been doing PSA tests. Perhaps several family members have had it, and blissfully never knew and died of other causes. I honestly don't know what I would do if I was given the choice to go back in time and not know. If I could somehow not know and still make a few positive dietary changes I think I would do it. But now the genie is out of the bottle.

Then I have to consider that very respected urologists such as Walsh strongly recommend against AC for men my age and say the prospect of saving nerve bundles and a positive outcome are much higher in younger patients. Perhaps if I wait I'll give up that window of opportunity. And I find the prospect of regular biopsies stressful and they also have an impact on one's sex life.

But then I find the penis shortening thing very disturbing. I know that this should perhaps be the least of my worries but . . ahem. . . I don't feel that I have a lot to spare in that department. Some men have stated that the effects are not only sexual but relate to such things as more difficulty with urination in a sitting position.

Then even if I am continent will that continence last when I hit 70 and those muscles are not as strong? Will this mean diapers at 70? Or should I consider that if I'm fortunate enough to live past 70 that this should be the least of my worries?

I know I'm rambling and perhaps even being a bit of a wuss compared to what some of you are dealing with. I hope that I'm not causing undo negativity but it seems hard not to have these concerns. Are there any long-term AS role models out there? Have any of you been following AC for a significant time? Or are there some who've followed it for a significant time and wish they hadn't?

diagnosed just 2 yrs ago, low-grade/low-volume (<1% of 1 of 12 samples).

Additional complication: low T. Have been on andro for several yrs for (age 56). Uro/surgeon aggressively recommended surgery. PCa researcher at UCSF talked me out of it ('what's your rush'). PSA had gone from 1 to 3, leading to biopsy.

I put off surgery, found a new (and very qualified) uro, who basically said there's two schools of thought (great!), but allows the androgel with AS. BTW my PSA in the past 2 yrs: 3, 1.67, 1.83, 1.27, 1.22, 1.56.

T levels up from @280 to 600. Next blood work in Jan. A lot to digest and consider.

In my case, first uro cut me off andro and I suffered greatly: hot flashes, loss of memory, rapid weight gain. With the path I was on, I truly questioned my ability to get thru a surgical procedure. Under the care of a new uro (and head of urology at a local (rochester ny) hospital, communication with PCa researches at UCSF, a new primary, and a oncologist/hemeotologist I'm doing ok - keeping an eye on the PSA, diet change, exercise. Maybe someday (near or far) I need to deal more aggressively with it, or maybe I get lucky and have it be indolent. No easy choices. If you choose to live with it, you take the stress and fear that comes with it!

Hi Don

I have posted a comment here before re AC..... I have been on it for two years the doc told me I may live for 15 years with no problems, until a recent biopsy proved they had got it wrong and I needed treatment asap,

So I have just had robotic surgery and am now left with a 3mm positive margin, If I had taken action straight away I would have had

a complete removal of the cancer.

In my view had I the choice again I would not have worried about the side effects and followed the easy option I would have it removed altogether.

At no point was I told that it may spreadrapidly or that they may have got it wrong !

 Good luck

Dick 1

 

Good post, Clock, I agree with your sentiments. All the studies, "what ifs", "could be's", nanograms, recommendations, become meaningless to you, when you suddenly become the "exception".

My entire PC journey has been one set-back, exception, plagues with problems and chronic side effects, even though on paper, I had "pretty good" numbers.

This whole topic of encouraging men not to test, not to treat, re-naming low grade cancers is so counter-productive to my way of thinking.

David in SC

I'm also sorry to hear of Dick1's situation. I think that I'm accepting the risk that something similar could happen to me but perhaps I will be eating those words if it does happen. My view towards AS is that prostate cancer is either aggressive or non-aggressive. I think if it is aggressive you have a fair chance of something cropping up even if you have treatment immediately as it is likely difficult to do surgery without leaving some tissue behind. All that being said, it is not my intention to be discouraging to anyone dealing with a recurrence as there are several men in my support group that have had very positive long-term outcomes after dealing with aggressive disease.

Viperguy, you are so very correct in that there is no simple answer for this. I hope you are better in all issues very soon.

be well.....