Welcome! I'm glad you got here, although I wish you hadn't.
You've learned the first lesson of prostate cancer - you can only trust a doctor to know about
his own specialty and not any other specialty.
Desai is a surgeon who knows next to nothing about
radiation oncology - I know because he was the first urologist I met with too. (I met with 6 doctors before I chose one.) But I do think he is a good surgeon, if that's the way you decide to go.
Scholz/Lam/Turner are great
medical oncologists, but they really know little about
surgery or radiation oncology. They are not really the all-purpose generalists you seek.
The first thing to do is read the sticky thread on the first page for the newly diagnosed to get a handle on all the arcane terminology. Also, you would do well to have Desai's office send your biopsy slides to Epstein or Bostwick (and not anywhere else) for a second opinion that you may have to pay about
$200 for. It is especially important in your situation, because (1) you may be eligible for active surveillance, if confirmed and (2) it's peculiar that your PSA would be that high with a small anterior tumor. I'd want to explore this further - prostate size/BPH? prostatitis?
Because of your elevated PSA, you are considered "favorable intermediate risk," but that doesn't really preclude you for anything that "low risk" is eligible for.
BTW - very important to keep copies of all reports.
Know that you do have time to explore. I took about
7 months before I made my decision, and could have taken longer if I'd needed it.
I do agree with you that they should have taken some random cores as well, but every institution has its own protocol about
stuff like that. The thinking is that the mpMRI finds the really significant highest grade ones and the others don't really enter into your decision. If you decide to go on active surveillance, you can insist on some additional random cores next time.
If you don't mind waiting until next year's
open enrollment period, Anthem Blue Cross has a Silver EPO plan that includes UCLA. If you get on that plan, they have an excellent active surveillance program, among the top doctors in SBRT and HDR brachy, focal laser, and a few excellent urosurgeons. The one thing they lack is LDR brachy expertise - no one in Southern California has that, as far as I know - you'd have to go to Al Taira in Mountain View and I doubt any of the Covered California plans would cover that.
I just threw a lot of stuff at you, and that's the tip of the iceberg. But take your time, and ask questions.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
•SBRT 7 year results
treated 10/2010 at age 57 at UCLA
•PSA since treatment:
1/11:3.9 5/11:3.0 8/11:3.7 5/12:1.2 9/12:1.3 5/13:0.4 6/14:0.5
• SEs of treatment:
after 2 wks: mild urinary & rectal - last 1 wk
1 yr after: mild urinary