Originally Posted by genpat12
... Had radical prostate surgery Aug 5 08, on Oct 23 08 PSA was at 16, ... did another PSA on Nov 5 08 and PSA was at 18. In Nov 08 had Bone Scan that was negative for metastisizing, also had Prostascint scan that could not find any cells. After surgery it was determined that I was actually at Gleason 9. Now they are sending me to Radiation for a consultation on Dec 8, 08. What is the bottom line to all of this? I am 62. Thanks
I am one of the responders on the board who has been dealing with a challenging case, in fact dealing with it for nearly nine years, and I'm somewhat familiar with the territory you are describing. (My initial, first-ever PSA (at my insistence) after a routine physical in December 1999 was 113.6, my Gleason was a 4+3 =7 with all biopsy cores positive - most 100% cancer with perineural invasion, and like you a bone scan (and CT scan) and ProstaScint (early 2000) were all negative. Unlike you, I ended up skipping surgery, radiation or other local therapy and went straight to hormonal blockade therapy, which fortunately for me has worked extraordinarily well.)
All of the doctors I've been involved with who were aware of my negative ProstaScint results were convinced I have or had "micro-metastases" that were too small to be picked up by the bone scan ProstaScint. That could be the case for you too, which could explain that unusually high PSA soon after surgery, despite the negative scans. By the way, I'm impressed that your doctor had you get a ProstaScint scan; too many doctors don't seem to bother to get that valuable information in cases like yours, based on what I've learned from fellow prostate cancer survivors.
Actually, a bone scan is not that sensitive, though it is much more sensitive than a CT scan for prostate cancer. It takes about 10% of bone involvment with cancer before the bone scan will indicate that cancer is present. A ProstaScint scan is fairly sensitive, capable of picking up tumors that are quite small. However, it too will not pick up very small tumors. While negative scans certainly do not rule out cancer, it is much better from a prognosis viewpoint when the scans are negative. (For anyone reading this who was not so lucky, prospects have improved quite a bit for such patients in the past decade, so what will happen in the future for such patients is going to generally be significantly better - sometimes vastly better, than what happened in the past.
Do you know how much your PSA increased in the year prior to diagnosis, or can it be calculated? In the past few years an increase of more than 2.0 has become recognized as an important, independent risk factor, perhaps as important as PSA, Gleason, and stage in assessing the seriousness of the case. The reverse also has meaning: a rise of 2.0 or lower indicates likelihood of a better outcome than would otherwise be expected. (There is a thread about that ("PSA velocity >2.0 ..." started 12/13/2007 on this board.)
Where are you going for the radiation consult? Radiation Clinics of Georgia (RCOG) in Atlanta has an excellent reputation for success in radiating prostate cancer. However, at least until recently, as far as I am aware, RCOG did not put much emphasis on using systemic hormonal blockade therapy in conjunction with radiation, and that could well be what you need. Another practice to consider, one with an outstanding reputation for prostate cancer radiation including working in hormonal therapy when appropriate, is not too far from you. It's Dr. Michael Dattoli's clinic in Sarasota, Florida. Among other tests, Dr. Dattoli has found that using the old PAP test is an excellent indicator of how a patient's cancer will respond to radiation. Dr. Dattoli has co-authored a book "Surviving Prostate Cancer Without Surgery ...," that covers a lot of important information. I don't believe RCOG has published a book, but they do make information available to potential patients.
You may also want to learn about hormonal blockade therapy. I'm convinced the two best books to get oriented to that therapy are "A Primer on Prostate Cancer - The Empowered Patient's Guide," Dr. Stephen B. Strum and Donna Pogliano, 2005, and "Beating Prostate Cancer: Hormonal Therapy & Diet," Dr. Charles "Snuffy" Myers, 2006. (Dr. Myers' book is also one of the best I've seen for delivering a healthy dose of optimism, something you could no-doubt use at this point!
There really are a number of good options out there!
A few other bases to touch, with this re-staging period being a good time to do it:
-- Have you had your bone mineral density assessed? Many of us prostate cancer patients have lost more than our share of bone density, and, unless countered (not hard), will probably lose more if we have hormonal therapy.
-- Have you had your vitamin D level assessed? Abnormally low 25 hydroxy vitamin D levels are epidemic among prostate cancer patients, and that deficiency seems to tie in to the disease as well as to contribute to decreased bone density.
-- In addition to the PAP test mentioned above, some experts, including Dr. Strum, co-author of the Primer, advocate use of other staging markers for patients with high Gleason cancers: CEA (Carino Embryonic Antigen); CGA (Chromogranin Alpha); and NSE (Neuron Specific Enolase). These and others are mentioned in the Primer. They are important in high Gleason cases mainly because the PSA that is such a useful guide for lower Gleason cases is often not adequately reliable as a monitoring tool for high Gleason cases.
-- Are you aware of diet/nutrition/supplement, exercise, and stress reduction tactics that appear to be important to supporting whatever therapies we choose?
Keep your spirits up and take care