Hello, I am revisiting this group after about 15 years.
Diagnosed January 2009 Stage 2 PSA 7, Gleeson 3 + 4. Told I would live a decade without treatment but that soon it would be incurable. RLP Operation May 2009. PSA now 0.04. August 2010: Still using incontinence pads. August 2011. PSA 0.04. Told I am considered cured. Still using incontinence pads. 4 years after op, PSA started slowly rising with a doubling time of 3 to 4 years. On reaching 2.4, this year 2026, I was PET scanned. I have cancer in 4 lymph nodes, and this is stage 4 metastases, but not as bad as visible spread beyond lymph nodes. So I will need lifelong hormone treatment but I have been told I will not die prostate cancer. A big shock as I thought I would be ok without treatment for a few years. Also the possible side effects are a big shock, as I had really only been aware of loss of body hair and breast growth, which both seemed a small price to pay for a life saver.
So despite doing a lot of reading and research on the internet I feel a bit naive.
I am not downhearted (yet). Hiking and real ale are my main hobbies and if I can keep them up I will be happy enough, although I know I may need to cut back a bit on the ale.
I had no idea that spread could occur at a PSA of 2, I thought it would need to be10 upwards before I needed treatment.
I have been on hormone for a week and few side effects. I am a keen hiker, and I walk about 40 miles a week. I have started Nordic walking to try maintain upper body muscle mass which helps with bone strength.
I would be interested to hear comments from people in a similar position.