Hi redhtz. Sorry you need to be here, but glad you found us. This is a really helpful forum, with guys here in a wide variety of situations. Almost no matter what's happening you're likely to find a few of us that can relate and maybe provide some support.
We have a thread for Gleason 9+ cases, and welcome to the G9 Crew (the least favorite chapter of a club no one wants to join!). That thread is meant as a gathering place for those facing these diagnoses. Our concerns tend to be more specialized in the advanced treatment options, so this helps us find one another. You'll find many forum members there, and links to their initial posts where I could find them. I've placed your forum name there already. It's organized by G10, G9 5+4, and G9 4+5, then by diagnosis date within each group. Here's a link to it:The Gleason 9 Crew -- Part 2, continued.
As others said, we have forum members here diagnosed with very serious metastatic situations that are still doing well much later. Notably, our forum's Todd1963 had a PSA of 3200, widely metastatic, over 10 years ago. Today, he has an undetectable PSA! His situation is admittedly unusual, but there is definitely hope. No one yet can predict any single patient's course.
You're going through one of the hardest phases of this, the initial shock and struggle to come to grips with this situation; there's no candy-coating that, it's very scary. Once the treatment plan begins to gel, and once it actually starts things tend to become better. Engaging in the battle gives you a new focus.
Please stay with us as you work through this. We're here for you.
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;
rising - 0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, TBD-7/17