Just starting out, wish I wasn't here, but so far so good :)
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!
I had robotic surgery in March with no radiation or medication, so a lot of what you mentioned is unfamiliar to me. But your last paragraph resonated with me. I was (and still am) very positive, but before the surgery my wife would break down and cry and tell me how worried she was about losing me. While I did have a few moments of negativity, it was worse on her, for sure. Keep the great attitude and keep fighting! None of us wishes we were here, but we're better off now that we are. There's lots of wisdom/history that's been shared here, and I hope you find it as helpful as I have. Please continue to let us know about your journey. You never know when you just might help someone else. Most of all, stay strong and just get through this!
Good you are positive and that attitude should help your wife feel more confident over time. With treatment you should be around for quite a few years Radiation is quite effective in killing off prostate cancer cells and for many men it is their first choice vs surgery --- JH is one of the best in the country I would also suggest your wife join you on all medical visits p to help build her confidence up- If you want I invite you to check out my 8 week video journal EBRT on www.TheProstateCancerCoach.com Dennis(ProstateCancer.net TEAM) mikeyb53 Good you are positive and that attitude should help your wife feel more confident over time. With treatment you should be around for quite a few years Radiation is quite effective in killing off prostate cancer cells and for many men it is their first choice vs surgery --- JH is one of the best in the country I would also suggest your wife join you on all medical visits p to help build her confidence up- If you want I invite you to check out my 8 week video journal EBRT on www.TheProstateCancerCoach.com Dennis(ProstateCancer.net TEAM)
