Hi runningscared. That screen name summarizes where a lot of us have been! If you've been surfing the web, you're probably properly spun up by now. Keep in mind that a lot of the information is out-of-date; many people with G9 cases do well with modern treatments. Having said that, you do have a serious situation on your hands. Does the biopsy report say anything about
G9 4+5, or 5+4? It doesn't matter a lot, but it's interesting.
As one new to this forum, one can't know one member here from another. Our forum member Tall Allen is very knowledgeable, and typically says things rather forthrightly. His links are typically helpful, and for what it's worth I support what he's saying. None of us are doctors, but some do have more info than others.
Personally, my case was not apparently metastatic yet and I chose radiation with 3 years of Lupron + Casodex (hormone therapy). Surgery is the realm of urologists, radiation is the radiation oncologist's, and systemic treatments are by medical oncologists. Surgery wasn't likely to be curative for me, so I went with radiation. It sounds like yours may already be in the medical oncologist's area.
I've added you to a thread we have running here for G9 & G10 cases. It's meant as a gathering place for those facing this diagnosis, and a way to look for others possibly in similar situations. Here's a link to the thread:The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)
Welcome, and I hope you learn enough here to help calm your nerves. It is scary, to be sure. Once you settle on a treatment plan in which you're confident, the stress goes down a lot. All the best....
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;
0.2-8/16, 0.5-12/16, 0.7-3/17, 0.8-5/17, 0.8-7/17, 0.7-10/17, 0.6-1/18