steve55777 said...
Balladeer,
My situation that put me into the chemo treatments (just completed) was as follows:
1) I had my first PSA test in several years in May 2017. It was 18.6
2) My new general physician had me do an MRI and said I shouldn't get a biopsy. MRI showed tumor, 99% likely it was cancer.
3) Did a RGCC blood test to see if there were any circulating tumor cells. There weren't. Assumption was the cancer was just in prostate.
July 2017, PSA=35
Sept 2017 PSA-58
4) Started Casodex in September.
5) Went to discuss proton therapy / radiation. Dr. said given my PSA doubling time and high amounts, he said I needed to do a scan--one that was a C-11 Acetate scan which would show even the smallest mets if I had any. I had mets in lymph and bone.
I'm not a Dr -- far from it -- but given your PSA scores, you might want to consider an advanced scan to see if there's anything outside prostate before treatment like chemo. The scan I got is unfortunately not covered by insurance. $3,000 at Phoenix Molecular Imaging. I've done 2 so far-- a before chemo and after chemo. The most recent scan last week showed over 90% of PC has been gone after Casodex/Lupron/Taxotere. 12 mets are now 1 plus two tiny spots. Just a suggestion--but it gave me a much greater degree of confidence over what a normal PET scan might show... Best of luck. We are all pulling for you.
Thanks very much Steve. I appreciate your post and your warm sentiments. I've been very-very torn on the need for an advanced imaging scan of some form for quite a while now. I'm aware of the fact that insurance won't cover it, and I'm certainly willing to absorb the cost myself, if I thought it had a chance of being truly "definitive", but I'm just not getting that feeling from others. It sounds like it has served your own purposes very well indeed, but the key question in my case is this . . . if positive, would such scan results change the proposed treatment plan for me? Several RO's and MO's are telling me "No", it wouldn't.
My RO had actually suggested an Axumin PET scan at one point, but he alert
ed me that it wouldn't be covered by insurance, and like most other PET scans, that lt could easily yield another frustrating "false negative" result. Perhaps most importantly, he said that regardless of outcome, his proposed 'triple-play' regimen of BBT+IMRT+ADT would remain the suggested approach, even if the advanced PET scan(s) revealed minor distant mets. He indicated that he would simply expand the radiation treatment areas (both BBT seeds and IMRT), to include pelvic lymph nodes, and one or both seminal vesicles, etc.
Given that backdrop, I just couldn't bring myself to justify getting on an airplane and spending $3-4k for an Axumin, C11-Acetate or any other advanced PET scan, and all I can do is hope that that decision doesn't come back to bite me oneday.