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Unfortunately, Rocky, it IS a crapshoot when it comes to actually ‘seeing’ what’s going on at a cellular level.
PSA’s and PSMA’s are NOT infallible - not even close - but right now it’s what they use to measure success or failure.
I read your brief history and in spite of all the intense genetic testing you had done at the center of excellence, the factors which stand out to me the most are your dangerously high Decipher Score and PSA velocity after surgery.
My surgical pathology was Gleason 4+3, clean margins, no lymph spread, etc. There was no Decipher test at that time. It took 5 years for my PSA to reach .18 and I just finished salvage radiation and am on 6 months ORGOVYX ( last month).
Now if I’m on 6 months ADT for something that took 5 YEARS to return, how long should you be on it, when your PSA rose so quickly after surgery and your Decipher Score showed such an aggressive profile?
It would seem to me as a layman that all things being equal, you should be on it longer than 6 months….how long I certainly don’t know. Orgovyx is really not that bad and others on the forum have been on it for over a year with no significant side effects. I realize you are concerned with your situation becoming castrate resistant if you stay on ADT too long but I think you’d have to be on it for a much longer time for that to happen. Best…
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Hi Heavy Phil
It took awhile to find the phrase “ persistent PSA” as compared to “ BCR”. My 0.31 reading at 3 mos post surgery was pretty fast for a BCR and the theory is that something was left behind after surgery despite clear margins and no lymph node involvement. Hence 6mo ADT 4mos after surgery and 37 radiation sessions 5 mos after surgery. I know that my risk of BCR within 10 yrs is very high from the Decipher reading but I don’t know that 24mos of ADT will be a significant benefit over 6mos with monthly monitoring . The four oncologists that I met with all used the phrase “grey area” on longterm ADT. The other murkier area is the advisability of putting high pressure on relatively unstable cancer cells by taking away all their testosterone for a prolonged period and pushing them to castrate resistance sooner.
Having said all that I just don’t know if I will become a cautionary tale! I still find it a bit astounding that there isnt more definitive data for the range of risk stratifications of PC. From my reading I would guess that a lack of early risk stratification protocol by urology practitioners over decades has a lot to do with this. Sorry about getting on my hobby horse but I think aggressive PC should be called something different than low risk PC…..