Oh my, Mike. You may be still reeling a bit. That's a hard diagnosis to hear. It should get better as you develop a treatment plan, but likely you're finding it tough just to keep breathing right now. Been there, done that. Toughest few days of my life, and I empathize with you!
No candy coating. Fine, sounds like me. The following is just my humble, know-only-a-little, non-medical, fellow PCa brother's opinion, so take it for what it's worth.
Epstein did my second opinion on my biopsy slides. Upgraded a couple of my G9s from 4+5 to 5+4, but mainly confirmed the initial analysis. In your case, it's very unlikely a second opinion is going to change anything. Get one for comfort if you like, even if you have to pay it's only about
$250, but I don't see any benefit for you.
You also have a very high amount of PCa. Your PSA is probably well under what it would show with less aggressive disease. The type 5 cells don't produce much PSA, and with the amount you have your PSA is maybe about
1/3 of what it might be if you had that much G7. Just an estimate, but PSA isn't as good a marker for the highest risk versions.
The odds of it being organ confined at this point are very low. With biopsy cores showing that much involvement, for it to be just little foci contained inside the gland is unlikely. In my humble opinion, surgery for a case like yours is unlikely to be curative, though some still advise it to "debulk" the tumor load, and some studies indicate benefit to it. Mine was similar, and I did have a 3T-MRI which indicated locally advanced extracapsular extension. My uro onc, a guy who had done thousands of surgeries, could barely make eye contact at our final review. He did not encourage surgery, though he said he'd do it if I wanted it. Surgery would have to be aggressive with a "wide excision" and no, quote, "luxury things" like nerve sparing. It sounded like a very high probability of permanent ED and quite likely significant incontinence. Very unattractive options. And the only way "no treatment" is an option is if you just throw in the towel. Your case merits very aggressive treatment, in my humble opinion.
I then met with a good radiation oncologist. Radiation and hormone therapy was my selection, and looks reasonable for you too, possibly including the pelvic lymph nodes (that's a little controversial, but may be a good idea with your diagnosis). They cover the whole prostate and about
7mm around it, more like 4mm next to the rectum to protect it.
Some more knowledgeable will chime in, but Tall Allen has shown studies that indicate HDR brachy + IMRT + ADT has extremely good results.
I'll add you to our Gleason 9 crew roster, and you even have the dubious honor of joining the 5+4 group. Truly the suckiest chapter of the suckiest crew no one would want to join - welcome! That thread is meant to help those with a G9, to see a number of folks in the same boat, and provide some encouragement by seeing so many doing pretty well!
Here's a link to that thread. Note there's another longer one preceding it, also linked in that thread:www.healingwell.com/community/default.aspx?f=35&m=3182035&g=3182504#m3182504
Sorry you need to be here, but please stay with us. You have a tiger by the tail, and this is a really helpful, knowledgeable, supportive bunch of PCa brethren.
IGRT by IMRT, 44 done 8/28/13: 50.4 Gy pelvic nodes, 79.2 Gy prostate
ADT2 3 yrs: Lupron/Casodex 5/1/13
Age 57: 55@Dx 4/16/13-
Bx 6/12 pos G9=5+4 (80%, 60%), 4+5 (2 at 100%, 80%, 10%), PNI+
3T MRI: Bilateral EPE, NVB+, SV-, LN-, cT3a
Date PSA fPSA
2/6/14 <0.01, T<10
8/13 <0.1 (ADT2, post-RT)
3/13 5.2 12% PCA3=31
9/12 4.1 15%