Last time I posted on here it was not long before I was due to have surgery, and I was having a few last-minute doubts about it (this is the post). I got some good advice from wise contributors who helped calm me down. I thought that I would check in seven months post operation with an update.
The surgery in September went well. They were able to spare the nerves on both sides, fortunately. I didn’t really have pain after the operation (worst things were the catheter and aches caused by residual CO2 inside the body) and the wounds healed quickly. I was also dry from the time that they removed the catheter after one week, which was a huge relief. The operation wasn’t retzius sparing, but the surgeon (a prof at UCLH) said that he and his team had recently worked out a modification to the standard RALP and they were finding that levels of continence had massively improved. Apparently they are going to write it up as a positive innovation. It certainly worked for me. I’d also done pelvic floor exercises religiously for eight weeks, which probably helped. Histology confirmed negative margins and no other presence of cancer in the prostate apart from the one, small area that had shown up on the MRI and biopsy. I recently had the results from the 6-month PSA test and it was undetectable.
After a couple of dispiriting months of no erections at all, they now seem to be coming back, including some spontaneous ones during the night. Turns out I’m one of the very few people who get intense tinnitus from tadalafil, so I can’t use it, unfortunately (although every now and then I try again, always with the same result — I just did 6 days of it and now my left ear is ringing like crazy, should have known better really...). The andrologist prescribed sildenafil instead. I asked him about there being no evidence that it helps with nerve regeneration, partly because of the short half-life, etc., and he said it wasn’t as simple as that, that there is evidence that the half-life is longer than previously thought, and a load of other stuff I couldn’t follow. It didn’t sound all that convincing, tbh, but he’s the lead in andrology and a professor at a major London teaching hospital, so who am I to argue. Like many others, I found Caverject effective but mightily painful. Invicorp worked well but I only used it once, as in fact I can get by now just with sildenafil. I try to use the pump daily but am not as disciplined about it as I should be. All in all, I’m definitely not back to anything like baseline function but I am doing okay and making progress.
Mostly, I feel pretty good, but occasionally I can’t help feeling gutted about this happening at a relatively young age. I try not to dwell on it though. I can also spiral into pointless fretting about whether I made the right treatment choice and should have asked more about HIFU (I did have one consultation with a specialist at UCLH). I feel like I only really know now, after the fact, what the right questions would have been to ask all the specialists, despite all the research I did at the time. In the end, I have to make a conscious effort not to think about ‘what ifs’, as there is absolutely nothing to be gained from it.
Anyway, for the most part, I know I have been lucky so far. I can do everything I used to before — travelling, exercise, etc. Sometimes I can’t believe that a year ago I hadn’t even been diagnosed and now I have had surgery, largely recovered, and basically gone back to normal life. I am trying not to get ahead of myself, as there was perineural invasion present, so the risk of biochemical recurrence is higher than normal. And there have been some low points that have nothing to do with the treatment itself (e.g. a long, maddening, circular conversation when trying to get travel insurance about whether I had an 'official diagnosis' of erectile disfunction; some people treating me as a walking memento mori, etc.). But for the most part I am pleased with my progress. I was lucky to have a very supportive partner. She's been amazing. This site has also been invaluable for all sorts of things along the way, from understanding treatments to specific issues with the catheter — it’s a really good resource!