How this treatment impacted my life the most
My older brother had computer assisted laparoscopic radical prostatectomy for which caused very troublesome incontinence to the extent of having to wear incontinence aids constantly and which greatly impaired his quality of life andalthough never discussed probably finished his sex life. I had a raised PSA diagnosed following an episode of sciatica which hovered in the 9-12 range for over 10 years. The PSA rose to mid 20s so I was investigated with CAT x2 and Bone scans x2 and MRI and PET scans. 2 trans rectal biopsies were equivocal and then I had a trans perineal biopsy. the urologist performing that suggested active surveillance would be appropriate. I was then referred to the regional urological cancer sevice seeing the professor of urological cancer surgery who strongly advised radical prosratectomyincluding remocal of pelvic nodes despite tumour being confined to within the gland. i later saw the oncologist who advised radiotherapy would give me a 60% absolute reduction in 10 year mortality from prostate cancer, Given my age this was equivalent of only 2-3 % reduction in all cause mortality over 10 years. Given my brother's experience I was keen to explore focal therapy and saw a consultant in a London clinic who wanted his own scans done at considerable expense to fid that Focal therapy is not available on the NHS and not at all in Scotland. I underwent a one moth course of radical radiotherapy in October 2023. My PSA has gradually declined to around 4 since. However i have suffered from urge incontinence and very variable urinary stream since, Also impaired erectile function and altered orgasm with ejaculate being small in volume and more of a watery consisytency presumably due to the function of the seminal vesicles being destroyed by the radiothearapy. i had some troublesome diarrhoea at the time and have had increased stoo; frequency and iBS type symptoms since, To be fair some of the urinary and sexual disturbance may be due to the high dose antidepressant medication prescibed to manage my bipolar disorder. having recently reduced this I have noted a little improvement. On reflection unfortunately I think current investigations are very poor at distinguishing between highly malignat and indolent prostate cancer. I lost one of my best friends just before the pandemic, himself a consultant urologist, to disseminated prostate cancer. He was asymptpmatic apart from a brief episode of perineal pain, found microscopic haematuria and scans revealed metastatic bone disease. I doubt if my more indolent disease will ever kill me and expect that I will die with rather than of it. I think both surgical and medical oncologists are guilty of underplaying side effects of treatment. Follow up seems to be left almost entirely to specialist nurse colleagues so the y are not hearing first hand reports of complications and side effects.
Why did I give this answer?
as above. With hindsight and the long duration of my raised PSA i think my cancer is indolent and that I am much more likely to die with it than of it. I should have continued with active surveillance. Like breast Cancer I think there is substantial overtreatment going on because of difficulty in guaging the aggressiveness of a tumour.
