I am often referred to as an exception by members of the forum.
Diagnosed at 46 with T3a and Gleason 7. PSA around 7.
Upgraded post radical prostatectomy to T3b and Gleason 9. Seminal visicle involvement, positive margins, perineural spread. Non nerve sparing.
Post operative PSA 0.014. After 1 year, it had progressively risen to 0.023. Oncogist recommended radiotherapy to the prostate bed. She planned on a narrow field. I asked for as wide a field as possible. She was reluctant. I also asked for ADT and she was resistant to say the least.
I paid for a PSMA scan. It showed very small amounts of cancer in two nodes outside the narrow field She proposed but within the limits of the wider field she could treat. She also agreed to bicalurimide.
I took one tablet per day for three months before 33 days of SRT. Was on bicalutimide for 18 months in total.
Fatigue was, quite frankly, a challenge. I put on about 8kg. My body hair fell out, not ny head hair. I also took tamoxifen to stop breast growth.
SRT finished 3 years ago, ADT 2 years ago. My PSA since SRT has been stuck at <0.006. The lowest they measure at my hospital. My oncologist said that she would have expected a G9 to have reappeared by now. She said it could still be there, but if it is it isn't behaving as aggressively as she expected.
Any regrets? No. I'm alive. I'm well. My daughter graduates next year as a doctor, my son in two years with a business degree. He'll be the next Lord Sugar or the next Del Boy. I'll get to both graduations. I think I'll reach retirement and beyond. Plenty of reason to think you'll still be running your business for many years.
Remember oncogists know your case best. Your PSA is only one factor in deciding when to go for salvage treatment. But I personally would insist on at least bicalurimide.
I was lucky that my psma scan worked at 0.023. It may have saved my life.
Finally, don't be afraid to challenge the medics. Armed with what I'd learned here I am known as the most informed patient they've ever had. This forum and the people on it are a force for good and a source of patient empowerment. To all those who helped me to get to this point, alongside the pcuk specialist nurses a huge thank you.