My husband (64 fit and healthy at diagnosis) was initially told Gleason 3+3 with a 15 mm lesion on outer edge of prostate but contained. Active surveillance was our health boards decision (in U.K.) as low grade cancer. 3 positive biopsies 1 from lesion area and 2 others from non lesion area all on one side of the prostate. He considered everything but decided he definitely didn’t want to opt for active surveillance as it would always been on his mind and he wanted to get rid of the cancer (Our brother in law was terminally ill at this stage with prostate cancer -he didn’t go to get checked until too late).

When we saw the surgeon we were informed he was never a suitable candidate for surveillance as the lesion was on the outer edge and bigger than 10mm. He had the op 7 weeks later (Dec 2024) and recovered fantastically, no incontinence etc. 7 weeks later we had post op check up and were told the lesion had grown to 34mm and extended outside the prostate and was regraded as 4+3 aggressive cribriform prostate cancer. The other 2 small lesions were low grade and deep in the centre of the prostate . We were devastated at hearing this but also pleased we’d ignored our health authorities advice and opted for surgery as the lesion had more than doubled in size in a matter of a few months.

Since Feb 2024 he had multiple CT, nuclear bone, mri and PETCT scans which were all negative!! None could locate where the cancer had metastasised however, his PSA was increasing at an exponential rate. Eventually his oncologist said hormone therapy (which he was reluctant to start) sometimes causes a spike which will show on a scan, so he had a 3 month injection which duly 3 weeks later showed the cancer on a rib. He had 3 sessions of SBRT on that rib last October and it was painless and easily tolerated and has done the trick. He absolutely hated being on the hormones (made much worse as he had such a great recovery from the operation), he felt terribly Ill and whilst understanding it can prolong your life, quality of life is often better than quantity. It’s taken 8 months for him to feel better again after the three month injection and his oncologist will try him on a newer hormone when he’s ready to try it again. He also needs angiogram’s now to check for angina as he had breathlessness on the hormones. Currently his PSA is rising again now and we will start the scanning process again soon.

Ultimately each person is unique and have to make their own decisions as to which treatment option they want to move forward with. We are both still very pleased that he opted for prostatectomy because it has the post op pathology of everything that has been removed which cannot be achieved by scans or biopsies. Goodness knows how bad a condition he would be in now if he’d opted for surveillance only.

I wish you all the best in your decision moving forward, I’ve only just found this forum and there’s a lot of information here to digest.

Best wishes and good luck.