First, it helped me so much when through this forum and other support groups i talked to guys who had tough cases with high PSA numbers, and they were still standing ... they'd been able to manage the disease for quite some time.
Second, i can't encourage people enough to get a specialist Medical Oncologist to care for or consult on your care. The dirty secret is that low-grade PCa is generally over treated (It's easy to get lots of $ for a surgery that may not be needed yet) ... and high-grade PCA (like your husband and I have) is under treated. Imho generalist oncologists and urologists just don't have the experience or toolbox to combine the best treatments as quickly and aggressively as we need.
Hormone therapy is a critical first step ... there are options to go to from there.
You can email me if you have questions ...
I highly encourage you to pay heed to what my friend Ray the Steel Guy has to say. I did.
I was be treated by a medical onco who is older than me and I am 65 and his methods were very conservative , the way he learned out of med school in the dark ages. However very effective and all my metrics continue to show improvment.
After talking to Ray and several others at GFMPH Florida at Sonny's, plus advice on this site from gurus like TallAllen, I decided to see Dr Turner who Mr & Mrs WorryWart recommended. He is an associate of Mark Scholz and Ricahrd Lam at Prostate Oncology in Marina Del Ray CA, a tad less expensive than Scholz who runs the joint and Lam who heads R&D. Had the first consult June 9 and was immediately given a script
Since their practice is private, Prostate Oncology can avoid restrictions that doctors affilaited with universities or major hospitals are bound by gold standards of care. I would not otherwise have qualified for Zytiga until I beome castrate resistate and fail Lupron in who knows how many years.
So why give the cancer free reign to prosper without having Zytiga chipping away at the testosterone produced by bad cholesterol. T does not cause cance, but once we have Pca, it feeds off the T.
I am in Phoenix yesterday for F-18 scan and today for C-11 having more high powered scans F-18 instead of normal whole body scan scintigram and also C-11 acetate to idenify any micro lymph nodes I do not know I have.
I get the results later today and have my second consult with Dr Turner tomorrow in Marina del Rey CA at 2:30 PM.
Latest whole body scans showed Oligometastatic cancer I previosuly had is no longer visible on standard whole body bone scan so must have shrunken to < 2 MM the scan limit but probably not totally flushed. So game plan is to ID the micro mets with F-18 and any nearby micro lymph nodes with C-11, and spot radiate them to obliterate them, then do more high powerd scans to verify and ID any uber micro ones to zap.
It would have taken years to get to this point following standard protocols even though as I said above, they were working great. The sooner I can get off Lupron and get some semblance of a libido back the better.
65 - DX 64 2/13 PSA 3.68 (6 mo doubling) Gleason 9 (4+5)
T1CN0M1B stage IV w. 7 of 12 cores worst ones 70% right PNI
oligometastatic at Dx 5 tumors 1 right sacro, 2 on
T4 & T9, none visible on 5-21-14 whole bodyscan
1st Lupron 4 month 3-28-13, 2nd Aug 1
PSA down was 3.68, 0.68 on 08-08-13
PSA 0.10 05-13-14,
Prostate shrunk from 50.4 to 31.6
Post Edited (LupronJim) : 6/19/2014 9:56:05 AM (GMT-6)