I was lucky to be able to have nerve sparing surgery which retained all 4 key nerves. While I very quickly regained complete bladder control with no need for pads, getting and maintaining an erection remains a difficulty 5 months post surgery. I have been given a vacuum pump which helps to a degree, but maintaining the erection is a problem. I have found using a "constriction" (C-ring) does help, and I can masturbate reasonably, but can't attempt any sort of penetrative sex. I understand that it can take up to 2 years to recover, but the longer it goes without being "fully functional" makes me worried it may never fully come back. I was also shocked about the shrinkage post surgery. I wasn't well endowed to begin with, but to lose almost 3cm has been hard to come to terms with. I did understand that post-surgery I would have dry orgasms, but didn't quite realise what it would feel like. It's obviously not the same, and it is something I miss, but it's ok.
I had post op pain which I put down to internal scar tissue, but did raise it with my consultant. I had a scan and it turned out I have fatty liver disease, so something else to manage with. Also when having the 3 month PSA check found out I had very low testosterone which so far I'm unable to have treatment for as my PSA isn't at virtual zero. I've lost muscle mass from this and the reduced activity post surgery, and have has some hair loss, but mainly pubic and facial, I'd shaved my beard before surgery and now don't think I could grow it back again as I only need to shave every 3 days or so. I did have a painful and swollen scrotum for around a month post surgery, but that has since resolved itself. I think that the low testosterone and my diabetes plus the reduced activity has impacted on my weight gain. I have now however started to see a personal trainer and dietician and am starting to make progress, it's a long slog but it is getting better.
I think the depression and anxiety I experienced were more like a PTSD, I kept dwelling on the "what if I'd not gone for a check?" I'd had no symptoms but though at my age it was worth going to have hat test. I couldn't get it through my GP so decided to pay privately. My PSA was only marginally above what was expected so a GP would have put me on a years check. The private clinic however referred me for MRI and biopsy which identified a Gleeson 8 tumour. My consultant said if I'd left it for a year "we'd be having a very different and difficult conversation now". That still affects me but I had counselling which helped to be able to talk to someone with no emotional link to me. A lot of that talking also led to a lot of tears thinking about all the things that I might have missed and the potential of what the "end" may have been like. I'm much more positive now and looking forward to the future with a very different outlook on life. There are still a few issues with the body image. Especially at the gym or sauna, with my now smaller penis and 6 operation scars from the robotic surgery. But does it matter, not really - I'm trying to wear them like battle scars - I've survived this!
For me the main impact was reassessing what important in life, but also finding out who among friends and family were there for me. Since the diagnosis and treatment, there are now a few people who are no longer in my circle - I'm not prepared to invest my time and energy into those who couldn't give me anything when I needed it. Work was always important to me, but now it's having time to do what I want with whom I want. So I've taken a pay cut to work part time to allow me to do more things I can while I can. I suppose the biggest change and is still an issue for me is the lack of a fulfilling sex life. I do what I can, but hope that the recovery will continue and things will improve
Yes
Based on my age and the grade of the tumour, no other treatment realistically was an option. I could have gone with radiotherapy but if that didn't work I'd be left with hormone or chemo as surgery wouldn't have been possible. I was a huge decision and I'm not sure I was fully supported by the clinical teams - it was more "this is what the MDT recommend - but it's up to you" sort of discussion. I had to do a lot of research to quickly make the decision - and even though things are not yet back to normal, I know I have a great prognosis which should mean prostate cancer will have no impact on my life span.
By sharing your story you can help others. Share what went well, what didn't and everything in between. Your experience is valuable. Help make the prostate cancer community stronger.
