Hi BigMak, sorry you need to be here, but glad you found us. I was diagnosed with Gleason 9, 5+4 at age 55, so I have some empathy for what you're going through right now. It sux.
You have a fight on your hands, to be sure. You're used to hard work, doing what needs to be done, taking initiative. This will involve a lot of that.
Stay with us, ask lots of questions. None of us are doctors, but all are either patients or partners of patients so we can offer our own experiences for what it's worth.
I've added you to the G9 Crew roster, a group of us with the Gleason 9 diagnosis. There's a thread (one of these forum conversations) there, with lots of G9 guys and links to a lot of their first posts. You can see what many others have considered, done, how they're doing, and so on. Here's the link:The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)
The good news is even though you may already have scared yourself by Googling too much, there is a lot of hope and most of us are doing pretty well. I'm personally now about
4 and 1/2 years after diagnosis, with a fully recovered testosterone level and stable PSA; a durable remission is definitely a possibility!
The side effects of hormone therapy are mainly due to the loss of testosterone, not so much from the drug itself. There is variability in that, and if you needed permanent
testosterone suppression the surgical route is a good option. But it is obviously permanent, and you may not need that. I was on ADT for 3 years (most recommend around 2 now), but have fully recovered. ADT isn't fun, but you can do it.
All the best as you work through this. It's a little complicated.
Bx: 6/12 pos, G9=5+4 (80%, 60%), 4+5 (2@100%, 80%, 10%), PNI+
cT3a (3T mpMRI: Bilateral EPE, NVB+, SV-, LN-)
Date PSA fPSA
9/12 4.1 15%
3/13 5.2 12% PCA3=31
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex, ended 3/16
PSA <0.1 : 8/13 - 5/16;
steadying! - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17, 0.7-10/17