TempFlightRestriction, and NewHere123, welcome to both of you. This is a couple's disease, deeply affecting the physical relationship in a marriage. The mutual support is so important and helpful!
I've added you to the G9 Crew roster, and sorry it took so long. We've moved to a new home and have not had much forum time for over a week now. Here's a link to the 3rd thread of a series of these posts. It's just meant as a gathering place for those of us facing this diagnosis due to our kind of unique concerns. We're often into multiple simultaneous treatments, and quite likely will be managing a chronic disease. There are many of us here, and if you review the G9 Crew threads you'll find many people's stories. It can be encouraging just to look at the list of forum members there. I've included links to the first posts where I could find them.
You've been handed a challenging situation, and aggressive treatment/follow up is warranted. There are lots of treatments, and more coming frequently. There are studies advising new ways to sequence the treatments we have, looking at the timing and how effective they can be with different timing.
There are some very knowledgeable people here, and Tall Allen usually has very helpful links. Having said that, be sure you do your own research, look up the studies, read them in detail if you are comfortable with that type of information. Studies often have qualifiers, exceptions, side notes about
certain risk groups, that may be helpful, and may temper the enthusiasm with which they're presented. Notably, there just aren't many G9 cases, and we're often lumped in with other risk categories, or ignored altogether.
Talk to your doctors, since no one
here is a substitute for their full knowledge of your situation. No one here is a doctor, though sometimes they sound like they are. Consider what you hear on this forum as just a bunch of friends chatting at a coffee shop, a meeting of a club no one wants to join!
Here's the link:The Gleason 9 (and 10) Crew - Welcome and how ya doin'? (Part 3, continued thread)
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, 0.8-7/17
Post Edited (Redwing57) : 9/4/2017 5:15:11 AM (GMT-6)