Greetings! I'm new to the forum but certainly not new to prostate cancer.
I was diagnosed in November 2010 (PSA 5.0, Gleason 3+3) at the age of 52. In January 2011, I had my prostate removed and it came out cleanly—negative margins, no seminal vesicle or lymph node involvement, nothing. My Gleason was upgraded to 3+4, and one nerve bundle was removed.
On the whole, my side effects from the surgery have been minimal. I'm 98% "dry" in the incontinence department (a good sneeze or cough may have me leak a few drops) and, surprisingly, with one nerve bundle, I can achieve an erection that's in the 70%-90% range without any chemical or mechanical assistance.
My post-surgery PSAs were undetectable for 54 months when, in September 2015, my first detectable reading came back at 0.05 ng/ml. It bounced around a little (0.04 to 0.08 back to 0.05 in September 2016. After that, however, it steadily climbed to 0.10 in December 2017.
When I met with my urologist in December, he suggested we start thinking about salvage radiation therapy if my PSA continues to climb. He suggested we could start as early as my PSA being in the 0.15 range, but not later than it hitting 0.50. My next PSA test is in April.
I'm pretty familiar with the short-term side effects of salvage radiation therapy. I would love to hear from those of you who are 2 or 3 years out from your salvage radiation with respect to any long-term side effects that you're experiencing, especially with regards to incontinence, strictures, ED, and bowel control.
Thanks in advance!
Welcome to the group. After surgery I had 38 rounds of radiation that ended in October 2016. So it has not yet been two years. The thing I noticed around 1.5 years out are the occasional blood in the stools and the need to have a lot bowl movements every day (over 10). Also, my insides where they zapped me often feels warm, or stirred up. None of these side effects are bad enough to change my mind about having radiation. The key is to go with a radiologist and technicians that have done thousands of these procedures.
Have you discussed hormonal therapy? You are a perfect candidate for the Stampede/Latitude trial therapy. They put you on two hormonal drugs, Lupron and Zytiga (with prednisone) at the same time. It has shown remarkable results in delaying increase in PSA and for extension of life. Also, there is a documented synergistic effect for having radiation while you are on hormonal therapy.
Again, welcome! You will not find a better group of men and women, all warriors fighting this disease than here. You are now part of our family. You will never be alone again. We are all pulling and praying for you. After all, people like us we have to stick together!
Thanks for the welcome and for sharing your details.
Since all of my post surgery PSAs were going so well for so long, I've only been dealing with a urologist. But after talking to him in December, I'm going to ask for a referral to a radiation oncologist when I have my next PSA test in April. We'll see what he or she has to say.
My surgeon was up-front with me before the surgery, telling me I had a 20% chance of recurrence. Now, 7+ years later, I really want to understand the risks of the side effects of salvage treatment and weigh them against the likelihood of success of that treatment.
The one thing I've learned in 7 years of dealing with this and researching as I have, is that there is no one right answer out there for any of us. We all have to be comfortable with what's right for us based on our research of available information at the time we make a decision.
Thanks again! —Dan
God Bless you Dan.