Hi John,

I am also a Gleason Niner and I understand how you feel. Following radiation and ADT for persistent PSA following prostatectomy I asked my oncologist for monthly PSA , Testosterone and blood panel tests. He agreed( of course I pay for them $230 a month until I pay off my deductible). The other thing I did was to get a second opinion from Fred Hutch in Seattle. They did a complete somatic analysis of the genetics of my cancer cells. It wasn’t good news but confirmed the aggressiveness of my cancer cells confirming why I had Gleason 9 and an earlier Decipher score of 0.99. Despite the bad news, their analysis did confirm the benefit of knowing the details when you get bad news. They suggested that I would be a candidate for PARP inhibitors if my cancer returned to active down the road. This is now on record with my healthcare provider and my oncologist is happy about that since it’s hard for him to swing such expensive treatment on his own.
After finishing 6 months ADT I have had 3 months of undetectable PSA. I always feel a bit of tension waiting for the results each month but on balance I would rather know if there is a recurrence sooner rather than later. When or if I have a recurrence I will definitely be going back to Fred Hutch for another second opinion on next steps.
Take care Des