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Would to do it again? Have surgery that is

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Posted 9/20/2013 3:48 AM (GMT 0)
I was refused Brachy and Proton RT in writing by MD Anderson.
Three different radiation oncologists predicted success from 40-70% in my specific case for IMRT/IGRT. Two said no, they would not take me, one was happy to sign me up, but warned of dire side effects for my case. Two centers in CA (Loma Linda one) refused to even see me.
My surgeon predicted 80% as a possible hope, but not likely reality, warned me that I likely would have permanent ED, and a high risk of incontinence, but that my tumor load would be reduced, and that I might get a few years more from that.

I did what was available at a known risk. Am I a stockholm syndrome guy? I don't think so. I did what made sense. Am I happy I had surgery? Not really. But for personal reasons I need to be alive for a few more years, and that gave me the best odds. I am now one year further down the line than any doctor expected.

Do I regret what I did? No. Do I now think another treatment choice would have been better? No. Would I rather have just lived large and died off a year or two later? Yes. Would I have been dragged kicking and screaming back to this side of the light out of my grave by angry family? Yes.

So my answer remains, I would have surgery again.

And no, I'll not answer the other questions.

See my sig for treatment dates.
Posted 9/20/2013 3:56 AM (GMT 0)
I'll say yes too, but I am very disappointed about my outcome of  having to use trimix the reset of my life. Being 52, in good shape, I felt certain I could recover ED at least to the point of normal sex with viagra or one of the other oral meds. But here I am stuck with trimix forever (or implant if i want to go hog wild). It did solve the severe BPH symptoms I had prior to surgery, urinating every 2 hours night and day.That's why I leaned against radiation treatments. I don't think radiation treatments really help BPH symptoms. Plus my parents both died of other cancers, big family history here.  I only get up once at night now, much better sleeping. Of course I could have gotten relief from BPH from laser or TURP, but i probably wouldn't have done that for fear of the 1/100 chance of losing erections, which I ended up with anyway with surgery! So a somewhat depressed, resigned yes here..........
Posted 9/20/2013 5:11 PM (GMT 0)
Ed,

I was treated a lot like 142.

I look at treatment as a time thing, not an absolute cure. Again, with a G9, I have never expected complete cure. From that perspective, I felt that I had no choice but to try the surgery, it gave me three 1/2 years of pretty good cure. Once i saw it start to climb, I did the radiation. Hopefully I can buy another several years from that.

At 4 1/2 years, I am at .02. Hopefully that will hold for another 3 or 4 years, at which time I will begin to consider HT. As I see the advancements in HT and other chemical therapies, who knows, I may be able to suck 10 years out of the final set of treatments.

That's my plan anyway.

Goodlife
Posted 9/20/2013 8:50 PM (GMT 0)
Unequivocally yes I would have surgery again.
Posted 9/20/2013 9:09 PM (GMT 0)
I have no regrets and would do it again in a minute. I still have ED and incontinence is still a drag but for me it is a small price to pay.
Posted 9/20/2013 9:32 PM (GMT 0)
My answer is complicated. I suppose that if I knew then everthing that I know now I might have pushed harder for external radiation with a brachy boost plus 18 months of ADT. Since I wound up needing radiation after surgery I could have saved myself some side effects by skipping the surgery and doing the whole thing with a combined treatment relying on radiation and hormones. This combo is what I usually recommend now for G9 guys with sizable tumors and no mets.

But of course, lots of that is predicated on information I got from my post-op pathology report. Prior to surgery I was believed to be a tiny-volume Gleason 7 (3+4) -- arguably a candidate for AS, and one for whom the treatment I described in the previous paragraph would have been barking madness. The only way I found out that I was a GS9 was by having my prostate removed, sliced like poscuito and examined under a microscope. If I hadn't had it removed I wouldn't know now what I know now (never mind knowing it then.) So I don't know what to say.

I vote maybe.
Posted 9/20/2013 10:01 PM (GMT 0)
Peter D:  In other words,  you might have taken a lesson from former SecDef Donald Rumsfeld, who famously said, back in 2002: "As we know, there are known knowns. There are things we know we know. We also know there are known unknowns. That is to say we know there are some things we do not know. But there are also unknown unknowns, the ones we don't know We don't know".

It's those doggoned "unknown unknowns" that spoil our plans.

Or, as Robert Burns put it, "The best laid schemes o' mice an' men Gang aft agley."

 

Posted 9/20/2013 10:16 PM (GMT 0)
I'm a guy who just wanted it out!

I'd do it again, but would probably try AS first. Five years ago AS was not as big as it is now. In fact when I talked to my urologist about it I called it "watchful waiting". He corrected me and explained it was AS.

Due to my large prostate, I did not feel radiation was the way to go. I would have had to try reducing the prostate with HT.

Removal of the prostate did help my urinary function ... an unexpected positive.
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