I'm currently 73 and in good health. 11 years ago my PSA tripled in 3 months to 15. No symptoms. Biopsy came back with a Gleason score of 7. No sign of spreading. I chose to have the straight surgery because that has the least side effects although the recovery is more difficult. My surgeon is the guy that other doctors go to for surgery. He's done thousands.
Surgery went well. Margins were clear which was very encouraging. Recovery was no big deal for me. Everything worked as before.
6 months slater I had my first post surgery PSA. I was expecting .02 and was a bit distressed it was 0.10. My doctor was unconcerned because my margins were clear. Over the next couple years, the PSA continued to rise. When it reached 1.0, my doctor agreed that I had a rare reoccurrence post surgery with clear margins. His recommendation was to wait until it got up to 15 or so then start Hormone therapy...Lupron. I wanted a second opinion and went to Vanderbilt where the doctor suggested radiation.
I returned home and got a referral to a radiation oncologist I had heard good things about. After reviewing my records, he said he would recommend radiation of my prostate bed. We had a long RV trip planned and he suggested an oral hormone by the name of Casodex. Did that and the only impact was two momentary hot flashes and a lack of energy. When we returned and set up the surgery I wanted a PSA test as a baseline. They said it wasn't necessary but I insisted. To my SHOCK, my PSA had dropped 82% to .174 after 66 days on Casodex!!!
The radiation was no big deal. Boring and inconvenient but no side effects other than looser than normal bowels at the end.
3 months later my PSA was .275 m&^%$%& 6 months later the Radiation Oncologist admitted 'we missed it' when my PSA had risen to .375. His feeling was to wait and see then do Lupron. Lupron filled me with dread. I asked about Casodex. He said OK so I did 3 months of Casodex. New PSA was .073! Other than having less energy no issues at all.
So I started a three month on and 3 month off treatment and my PSA would vary between a low of .090 and a high of .680. Toward the end of the treatment the lack of energy was kicking my rear...especially in hot weather. I also switched by to my original Urologist/surgeon. There is not a 'prostate cancer reoccurance' doctor specialty that I've found. At least not near North Alabama.
I asked him how Casodex worked and he admitted he didn't know. I wanted to try 1 month on and off and he agreed. That's been 3 years now and my PSA varies between 0.1 and 0.33 ish. The doctor just shakes his head and comments he should write a paper.
Last year I heard about the new test PSMA with Plarify from Genesis Labs and got a referral. I want this thing gone!
I stayed off Casodex for 75 days and my PSA rose to .8 The lab said that would be plenty to find the cancer.
The test was 1-3-2022 and showed no cancer. What the hell!
So I'm back on Casodex and my PSA after 66 days is down to 0.13. I'll stay on it another month to get back in the range I want.
Casodex is now generic and goes by BICALUTAMIDE. I take 50mg daily. Tiredness is the only side effect and it's not that bad. I have to keep reminding myself I'm not 45 any more.
I'm really surprised at the lack of information about reoccurrence. Everything I read suggests that keeping my PSA as low as possible is a very good thing so for me I'll keep doing the month on/month off. My doctor says that eventually it will quit working as well but there are other treatments. I don't want to go on hormone therapy (Lupron). I have friends who are on it and while they are healthy, their quality of life has suffered a lot more than mine. As a friend of similar age who is on Lupron said. My PSA is undetectable, I have no muscle tone, no energy, and couldn't get it up with a crane.
This is my story. I hope it helps someone.