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Cancer: Prostate Message Board

Cancer: Prostate Board Index

As one of the outstanding members of this board (IADT3since2000 aka Jim) might put it, I was originally “challenged” with a diagnosis of prostate cancer in early 2007. First time ever PSA tests came in at 298 and 263. Biopsy of 12 cores showed 8 were cancerous – Gleason scores of 7 cores at 3+4 and 1 core at 4+4. CT, Bone and MRI scans not showing any metastasis. Did hormone therapy (Lupron & Casodex) and received radiation therapy. Response to hormone therapy was very good - PSA’s came down to .3 during IMRT radiation and everything seemed good by July of ’08 when radiation ended and I stopped taking hormones at that time.
Went in for 6 month PSA check in Jan of ’09 and found my case had become a bit more “challenging” – PSA up to 7.2. I continued to consult with radiation oncologist which in hindsight was a mistake. PSA’s continued to rise all during ’09 – from that January score of 7.2, April – 42.5, May – 67.3, July 202.4 and beginning of August – 235.8. A bone scan in June still showed no metastasis.
During these months, doctor is saying that rising PSA is most likely dying cancer cells and soft tissue damage, both from the radiation treatment, putting out higher than normal PSA. He kept saying that they should turn down at any time although I could tell he was becoming more and more uncomfortable with diagnosis. He also kept claiming that it was not necessary to start hormones again as long as the cancer not showing in bone (hence the negative bone scan in June reinforced diagnosis).
By August, I asked to be referred to Moffit Cancer Center where I had found a clinical trial that might possibly apply to my case. The clinical trial was interesting but I mainly wanted to see a medical oncologist who knew more about prostate cancer than my radiation doctor. I’m still amazed that the radiation doctor did not admit that my case had progressed to a stage that his expertise no longer applied.
To try to make a long story a little shorter, I ended up being excluded from the trial at Moffit - had to have a clean bone scan from less than 60 day prior (Mine from June was by then 90 days old). New bone scan at end of Sept showed metastasis to bone along with PSA now up to 416 ng/mL. I’m sure William Bendix as Chester A. Riley would have said – “What a revolting development this is”.
However, I at least now have my case being treated by a medical oncologist. But I still have not found a doctor in FL who is a prostate cancer specialist and I believe that until I do, I am choosing the treatment I feel I need and consulting with doctors at Moffit to discuss. I have re-read “A Primer on Prostate Cancer” by Dr.Stephen Strum and Donna Pogliano and also “Beating Prostate Cancer: Hormonal Therapy & Diet” by Dr. Charles “Snuffy” Myers. I have spent a lot of time reading past newsletter articles published by PCRI and have set up lines of communication with a lady named Jan Manarite who handles the “Helpline” for PCRI. I plan to participate in this board where I can see there is available some very outstanding advice being given from a patient’s perspective.
At the end of Sept I have started on ADT triple blockade (6 month shot –Eligard, 50 mg casodex daily, Avodart daily). My first evaluation test was encouraging – testosterone level of 35 ng/dL and PSA reading of 18.5 (taken late Oct and down from the late Sept reading of 416). I’m starting Zometa infusions in January. Will look at testosterone and PSA levels again in January - am scheduled for next Eligard shot and bone scan in March ’10.
I also have some questions to ask but they can wait. I invite anyone on this board to make any comments, suggestions or observations after reading this; and I thank you for your time in reading it.
Right now, my only comment is one of self-encouragement – “GAME ON”

John S.

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