Hi Andrew
Sorry for the delay in responding.
Please feel free to check my profile and surgery journey thread.
I'm 52 and last September got diagnosed with Gleason 6(3+3) T1c with PSA 5.6.
Its one hell of a journey with massive decisions for sure. In my case I had 3T mpMRI which came back PiRADS 4 with suspect areas. A TPM showed multiple tumours in all 4 areas of the prostate although thought localised and early stage.
At the time it was quite a shock. Did the usual with asking my local surgeon about all the options from AS, Surgical, HIFU, NanoKnife, Radiotherapy, Brachytherapy, Proton Beam, Focal Laser etc etc. Most were off the table as I have multifocal disease.
While waiting for the London MDT to review I made a point of going away....gettting blasted on beer/wine for a few days which worked well to clear my head. Then a sat down with my ex, who is an immunologist, and went through all the science and histopathology to understand what I dealing with and try an articulate some of the risks with a hope to choosing a pathway with best outcome.
I found several papers which went through all the pathology of cancer and how it evolves over time. What I wanted to understand was even though my tumours were early stage is there any likelihood of migration plus probability of as yet undiscovered area's of higher grade cancer.
I found several papers which mentioned in active surveillance studies it has been shown metastases had occurred. Also there was early evidence that low grade cancer, although very stable in situ, can give rise to spread. This research is still fairly recent so more data needs to be collected in terms of were the type 3 cells directly involved in the spread or were there clinically undetectable regions of higher grade involved.
At this point it was looking like surgery was the only sensible option in my case. However, I was mindful of impact in terms of ED, being sterile and possible incontinence.
The next step was a second opinion. I looks high and low for well known high volume (>100 prostatectomys per year) surgeons with greats stats. Fortunately I reached out on this discussion forum and via my local support group. This proved invaluable and for me a game changer.
Via several folks on here and in my local area I found a great surgeon based up at London Bridge (via private) - Prof Whocannotbenamedonhere. I did the usual extensive checks outside the personal recommendation and his credentials ticked all the right boxes plus I learnt about a relatively new approach to prostatectomy - retzius sparing robotic assisted radical prostatectomy + NeuroSAFE.
This appeared to mitigate most of my concerns around potential post-op continence although ED issues still seemed to be a factor which was mixed. NeuroSAFE made a lot of sense in terms of optimum margins as a pathologist analyses' your prostate resections in real time while you are on the surgical table thus increasing chances of proper safe margins.
I met up with the Prof first week of November and from the moment I met him knew he was the surgeon I wanted operating in such a high risk area. He agreed with my concerns that even though I had low grade gleason 6 cancer early studies showed its not as safe as one might hope. Plus in my case as all four quadrants were involved its likely ~60% that post surgery my histology would be upgraded.
I booked surgery for end of November. Went in the night before and stayed at a hotel next door then it was 7am check-in for surgery. Everything was very smooth end to end. During surgery it was found that the tumours were more extensive than had been shown via biopsy/MRI so following a couple of cautionary flags from NeuroSAFE one nerve bundle was partially taken and a bit more tissue at the base. So in effect my surgery was 3/4 retzius sparing and 1/4 alt retzius. Given it was slightly more complex made me even more thankful I had found one of the top UK/EU surgeons and he was confident of a good outcome.
Post surgery I had no pain and was also lucky to not need a stomach drain as there was no significant bleeding to manage. The prof mentioned my timing for having surgery couldnt have been better as the cancer was very close to breaking through the capsule and had I waited a few more months might have been a totally different story.
Couple of days later I was released and then I had the wait for post surgery histology results. As it turned out these were very good and showed all margins clear. Final grading was G7(3+4) T2c. So the profs hunch there would be medium grade tumour was correct and hopefully removed before any micro metastasis had occured....time will tell.
I made a good recovery. Urinary catheter was out after 14 days and i had pretty good continence from the outset. A few leaks and drips until week 5 where the surgical stitches start to soften and allow the sphincter to close more completely. Up to week 12 I had a few stress leaks. A couple of partial wettings at night after a shin full of beer. But other than that totally dry and not used pads since week 7 albeit for PSA testing when I am so nervous I dont trust my bladder until its over :-)
To my delight very early on post op I started to see signs the old chap wasn't flaccid after all and there were signs of life. 4 weeks after surgery I was able to have penetrative sex and to date have good performance. I would say tiredness affects its more than pre-op. But if I'm awake and refreshed its as good as before. Add 2.5mg tadalafil to the mix and the performance of my twenties returns.
Only glitches I've had are pelvic floor discomfort which will settle over time. Please a couple of bladder voiding issue which were concerning at the time but I isolated the triggers...coffee/hot curry. Since then its settled.
PSAs since have been undetectable so thus far my outcome has exceeded my expectations.
Obviously with any surgery the outcomes vary on a case by case basis. For me Retzius Sparing RARP + NeuroSAFE worked very well plus the choice is surgeon was a game changer. Longer term who knows but for now its positive and a totally different place to where I was pre-surgery.
Shout or PM if you need more but I hope this helps give some reassurance and detail which can be fed into the mix with your decision process.
Simon