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Bob, your story is somewhat similar to mine. I too was diagnosed in 2009 but chose to go on Active Surveillance because it was only a Gleason 6. In 2011 I had Gleason 8 so I had radiation (proton) and was in remission for 5 years but now it's back. Incurable but treatable, they tell me. You didn't mention if you had any "positive" margins after they examined your removed prostate back in '09. With a prostatectomy the surgeon tries to remove just the prostate (assuming you had a low risk cancer GS6 or 7A) and leave the "bed" (surrounding tissue that is not the prostate.) If you had a rising PSA after surgery I think one of two things happened. (1) the surgeon did not get all of the prostate tissue and left a little piece behind (human error) or (2) while they told you back in '09 your cancer was confined to the prostate, in truth, a small amount of cancer had already penetrated the prostate wall and gone into the prostate bed. This should have seen when they examined the prostate after it was removed. I expect they missed this because if they noticed a positive margin, they would have started radiation right after surgery not wait 2 years.
Regardless of the cause, you now have "advanced" cancer and your next course of treatment will probably be wonderful ADT, probably Lupron. When my cancer came back I waited until my PSA was about 10 and started Lupron for a year. My PSA went down to .7 and stayed there but the side effects of wonderful Lupron began to get to me so, I am now on a Lupron "holiday". I get 3 month PSA tests and my doubling time is about 3 months so I will probably be back on Lupron by the fall. You didn't mention your age, but if your Auxmin PET scan showed it was only in the bed, (as mine did) you probably many good years in front of you.
When it was noticed that the PSA was rising again after surgery, the surgeon pointed out that it wasn't always possible to get every single microscopic piece of the prostate. He, quite correctly and logically, pointed out that there is no dashed line that says "cut here."
Yes, I'm scheduled to start Lupron this week. We'll have the PSA results from last week and be able to compare them to my last one (July last year, I believe it was a 1.6) to see how aggressive things are.
I plan on asking about Salvage Therapy. It apparently works good in some situations - which is part of why I've posted these questions. My first radiation was Xray, so I'm thinking that the Proton might not be as bad for me as having two Xray based radiation treatments. As far as I can tell, other than this PCa I'm in good health (although I probably should drop 30 lbs,) so this might be a reasonable course of action. We'll see.
I will turn 60 in about a month. It's been about 11 years since my original diagnosis. I honestly can't remember if it was mid 2009, late 2009, or maybe even very early 2010. I'm pretty sure I was 49 so that would put it into that range. I know for sure that my radiation started the very first week of 2011. At the time of the original diagnoses, we confirmed via biopsy (that was a weird experience!) that there was definitely cancer in my prostate. However, the general impression I got from every medical person I talked to (Urologist, surgeon, radiologist) was that we'd caught the cancer very early and things looked good. I can't remember my Gleason at all.
I've identified who my surgeon was and I'm going to contact his office tomorrow in the hope that maybe, just maybe, they still have my records. I will also see if I can find the Dr. in charge of my radiation and hope that possibly he might still have records. I don't remember ever hearing about a "positive margin" (or any margin for that matter).
I've read about intermittent ADT and that sounds good - although I know I'll have to be on the Lupron for a while to lower and then stabilize my PSA first and see what happens.
