The following was sent to me as a comment to a prior post. Instead, I think the comment warrants being put up as its own separate post. It is written by a urologist who has requested that I only use his initials instead of his full name.
I would like to thank you for your website. Ironically I am a urologist and was diagnosed with Gleason 9 cancer with some signet ring cell formation with bone mets to the pelvis and ribs lat June. I am 58. Your site helps me keep up with some of the latest and greatest. My father actually calls me with items he reads in the Wall Street Journal
My PSA had been stable at 1.8 for years and jumped to 5.8. I went on ADT and after 3 months later I underwent 4 cycles of Taxetere and Carboplatin up front rather than waiting for what they now call (horribly named) the inevitable castrate resistant tumor.
I was going to have pelvic radiation, but we found some rib mets that were initially missed and decided against it. I work full time, other some decrease of ER coverage. I force myself to workout with a personal trainer 3 times per week. Somehow I live through the fatigue. I am the only man at the health club buying soy protein trying to lower his testosterone:-) I do miss my hormones and so does my younger wife. i have a 3 year old child and a 28 year old.
I take my fish oil, green tea extract, POMx and lipitor(off label, soy protein shake every morning. I avoid animal fats and eat mostly fish. I will probably start metformin off label after my next 3 month imaging.
I have no regrets regarding getting chemo up front as I have seen enough patients with high grade tumors suddenly have widespread mets despite very low PSAs. Before I was diagnosed I sat at a meeting next to Phil Kantoff, who is now one of my oncologist along with his colleague May-Ellen Taplin, from Dana Farber and asked him why they don’t treat patients with the high grade tumors which are destined to fail up front. He gave me the standards answer at the time was that it was not done.
Despite the bullshit regarding the PSA and trend toward active surveillance I hope that the experimental treatment will be offered up front prior to becoming hormone resistant in high risk patients. I lost weight with a diet and exercise prior to my chemo and was able to tolerate the full doses. I don’t think I could have being sicker as most of the patients are.
Keep up the good work. I wish you well!