motpnh, welcome. Your husband is lucky to have you seeking information for him! This forum is a great place to find support and help. I've added you to the "G9 Crew" roster on the thread we have for those facing this diagnosis. It's a gathering place for people to share concerns, successes, and so on. With these high-risk cases the concerns are generally about
aggressive treatment plans, and not as much about
dealing with inconvenient side effects. Anyway, check it out if you haven't, as you'll find many of us there with most doing pretty well. There's a lot of hope! Here's the link:The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)
I had a somewhat similar situation, though all 6 of my positive cores were G9 with extensive perineural invasion (cells grow along the nerve pathways to get out). By MRI I was stage cT3a. With all of that in play, we decided surgery was unlikely to be curative. I ultimately chose radiation and ADT.
Specifically, I had all of my diagnosis and treatment actually done at Vanderbilt
, so may be able to help with questions about
their facility. I was very pleased with their work. They are quite conservative, which I liked. However, if you want the experimental, cutting edge, "let's try this maybe it will work" approach, that's not their style. They are a regional referral hospital, so they're especially familiar with those struggling with side effects from treatment received elsewhere. That's partly why they're conservative, having seen just what can go wrong.
I don't know the urologists there anymore, but my RO was Dr. Eric Shinohara. I would recommend him for a consult about
radiation if you're interested. He patiently answered my oh-so-many questions! Vanderbilt had multiple physicists on staff to develop their radiation plans, and I have had very few radiation-related side effects.
55@Dx on 4/16/13. PSA 5.2, G9(5+4), cT3a by MRI.
IGRT - 44 sessions (79.2 Gy, 50.4 Gy pelvic)
ADT2 - Lupron+Casodex (3 yrs)
PSA <0.1 : 8/13 - 5/16; steady at 0.7+/- 0.1 since 3/17My Story