Hi, just found this site, courtesy of my new urologist. 69 y.o., family history of PCa on both sides, so have been expecting this my whole adult life. Took what I thought were the proper precautions, regular PSAs the last 20 years or so, under the care of a urologist.
Unfortunately, my urologist placed too much faith in the free vs. total PSA, and said he didn't like to do biopsy until he felt it was really necessary due to risk of infection, etc. So even as my total PSA rose, my free % stayed around 30% (>25% considered OK), so he advised waiting, and I trusted his judgement. When my total hit 15.5, he said "well, I guess it's time." Took 6 months to get biopsy scheduled, by which time my PSA was 19.9. Long story short, all 10 cores were positive, overall Gleason 5+5.
Immediately called Johns Hopkins (3 hours away), got set up with a great team there. PSMA PET scan showed some seminal vesicle and pelvic lymph node spread. Expected prostatectomy with followup RT, but was surprised that they recommended no surgery, go straight to ADT and EBRT. Their logic was that I would need radiation due to the regional metastasis anyway, so why endure surgery too. Couldn't really argue with that, despite my desire to "just get that thing out of me."
So I started on bicalutamide, then Eligard injection, and now abiraterone (replacing the bicalutamide) plus prednisone. Walking 3 miles a day and working out with a trainer, trying to fight the inevitable metabolic slowdown as my testosterone drops toward zero. Will start 8 weeks of EBRT in 6 months, and be on ADT for 2 years.
I feel fine so far, and my attitude is surprisingly positive. To date this is much harder on my wife than me -- she's scared she's going to lose me, but I keep telling her I'm not going anywhere anytime soon!