After the results of my prostate biopsy were available, my Urologist called me and said that I had a very serious cancer. He strongly suggested that I consider a research study "Neoadjuvant Abiraterone Acetate Plus Leuprolide Acetate in Men With Localized High Risk Prostate Cancer".
I researched the protocol and decided not to make a decision until I met with my Urologist. He wanted me to get a bone scan and a MRI of the Prostate. I took the first available appointments for both - May13, 2011 for the bone scan and May 18, 2011 for the MRI of the prostate. My wife and I met with the Urologist on May 23, 2011 after he had the results of both the bone scan and MRI of the Prostate.
The bone scan was negative and the MRI showed the tumor bulging out of the capsule and pushing against the nerve bundle. It did not show any lymph node or seminal vessel involvement. His statement was "The MRI is not a Microscope". My Prostate Acid Phosphatase and Testosterone levels were normal, which he said was positive news. He again recommended that I enrol in the research study which involved being randomized to either Lupron every three months + Abiraterone/prednisone for 24 wks or for 12 wks. This would be followed by a radical prostatectomy after the 24 week period. He said at my young age, I should do everything available to me.
My wife was able to schedule an appointment at the Dana Farber Cancer Institute on June 2, 2011 to meet with an oncologist to see if I qualified for the study. To make a long story short, I became Patient #56 of 58 and was randomized to the 12 week Abiraterone + prednisone arm of the study. I received my first injection of Lupron on June 9.
I hope that this information may be helpful to another person that finds himself in my situation. I will post periodic updates.
I am 4 months post abiraterone clinical trial and radical retropubic prostatectomy. Pathology staged the tumor T3b post surgery due to finding cancer in the seminal vessel. No cancer found in the lymph nodes and the margins were clear. They could not give a gleason score due to the effects of the lupron and abiraterone. I am down to using about 2 - 3 pads a day. I began a 8 session physical therapy for pelvic floor muscle control and strengthening. This was recommended by a local urologist and I had read an article that said the PT improved continence. I will continue to have my PSA checked every 3 months and will begin radiation therapy if it bumps into the detectable range.
My PSA went from <0.1 to 0.1 between April 2012 and July 2012. On August 20, 2012 my PSA was 0.13 and testosterone in normal range. I decided with my surgeon, oncologist and radiation oncologist I would begin neoadjuvant hormonal therapy with Lupron 22.5 mg q3 months for 2 doses and Casodex 50 mg daily for 6 months. I began IMRT 2 weeks after beginning the hormonal therapy on September 13 for 38 treatments. I completed my radiation treatment on November 7, 2012 and completed the hormonal treatment in February 2013. My testosterone recovery has been slower than after my surgery. My testosterone was 190 and my PSA remains undetectable as of November 2013. I did have another round of Pelvic Floor muscle physical therapy and this did improve my incontinence. I only use 1 pad/day and try to keegle on a regular basis. I will continue to get my PSA checked every 3 months.
Happy Holidays to everyone.
Greg
Since my last posting, I continued to have annual check ups with my urologist, oncologist and radiation oncologist. I'm happy to report that my PSA has continued to be undetectable. Going forward, I will have my PSA checked every 6 months. My radiation oncologist said that 2 yrs with no PSA rise is a milestone. The official term he used was NED (No Evidence of Disease).
Happy New Year!
I continue to have my PSA checked every 6 months and the level remains undetectable.
It has been quite sometime since my last update. I continue to have an active life and grateful to have recently had surgery for insertion of a urinary spincter. The specific device I have is the AMS 800 Urinary Control System 1. It has been in place since June of 2020. Everything is pretty much back to normal and I only use one thin pad per day. I must use the donut hole cushion in chairs to prevent my spinchnter to move and cause it to leak urine. I am now considering getting an implant for my erectile dysfunction. Next year I an celebrate 10 years of "No Evidence of Disease".
I continue to be no evidence of disease. I did get a urinary spinchter last summer and it has been helpful reducing my leakage, especially when I am skiing or other physical activity.
I am now approaching 11 years with N.E.D. I retired from my job this past June, but will continue to do per diem shifts for now. My spinchter may be losing some of it's holding power due to urethral erosion. I have not been relieving the spinchter at night as recommended, so I plan to start that again. If needed, the surgeon would be able to place a second spinchter. For now, I use a medium Tena Pad and it lasts for the day. I do not have to wear a pad at night, which does please me.
I wish you all well and appreciate sharing my journey.
Greg's e-mail address is: gregjdumas AT gmail.com (replace "AT" with "@")
