Hi Richard
Please take a look at my journey 'Retzius sparing RARP + NeuroSAFE journey'
I was pretty much in the same place as you are now.
Roughly same age and PSA was hovering around 3.9-4.5 from March 2016 to July 2019 when it spiked to 5.6. Although I had foolishly left it for nearly 18months since previous PSA and 1.5T mpMRI (PiRADS 2) around Jan 2018 as was given the all clear but advised to continue regular PSA's.
Following the PSA spike in July 2019 to 5.6 I went for a 3T mpMRI locally which came back PiRADS 4. Booked in for template biopsy at Princess Grace in London early Sept 2019.
5/10 cores positive with gleason 6(3+3) grade 1 adenocarcinoma in all four quadrants of the prostate.
Advice was it would be fine for AS and this was echoed by the London MDT.
I wasn't suitable for focal therapy and generally RT wasn't advised for someone <60yrs due to potential for primary secondaries later on in life.
Surgery also an option but local team suggested no need to rush although AS has ongoing impact in terms of PSA anxiety, biopsies and scans.
I spoke to a number of fantastically helpful folk both on here and via local support network. Also connected with an ex who was a cancer trials researcher with a couple of the big pharmas. Also researched myself the risks of leaving the #lowgrade cancer in situ. Basically, the longers its left the higher the risk of potential spread or metastasis. With my case one of the tumours was thought to be very close ~1mm for prostatic capsule.
I concluded looking at the research and the fact there were fairly recent studies which show that although Gleason 6 cancer is low risk there is still a low probability of spread/metastases. Plus I was also mindful that I may have higher grade cancer although not discovered which is the case ~40% of the time with post-surgery histology results.
Speaking to my ex and some medical friends this was echoed and helped me conclude the best thing to do in my case was to bite the bullet i.e. surgery.
Next steps were to get a second opinion.....
Via the great support network I found a very well respected high volume London based surgeon (Prof Whocannotbenamedhere) and setup a consultation to move things forward.
I decided to have the relatively new technique which is yielding great early stats in terms of continence. ED still very much hit and miss on a case basis plus a realtime pathologist on standby during the op to feel live feedback on tissue taken to better determine safe negative margins.
Procedure I opted for with the Prof was the Retzius-Sparing RARP +NeuroSAFE. Basically less disturbance or the bladder during surgery and disturbing critical nerves associated with bladder control.
I went in for surgery end of November. Great team and really looked after me. Think I closed my eyes about 8:45am and awoke at 11:45am.
No pain post op at all. Some should cramps the next day which were expected due to the gas used to inflate the abdominal cavity. I came home 2 nights later. Felt really good but had to be mindful of following the guidelines set out by the team in terms of recovery.
Histology came back within a week and showed I was indeed prudent not to wait any longer. The grade had increased to T2c Gleason 7 (3+4) and the cancer was more extensive than seen on the MRI. Had I waited longer things might have been very different as the tumour was extremely close to breaking out.
Catheter was removed 2 weeks after surgery. Very good continence although slight leaks and drips here and there...mostly in the afternoon or when tired. Never any nocturnal issues. I wore pads up until week 6 routinely mostly for reassurance.
From an ED perspective I consider myself very lucky. I had stirrings in that region day after surgery. And have made a good recovery and can have penetrative sex without the need for tadalafil or such like. Although when I'm tired I may need 2.5-5mg tadalafil which basically makes me feel like I was back in my early 20s :-)
So surgery was a bit daunting. The night before I was in autopilot and booked at hotel right next to the hospital as needed to check in for 7am. Amazingly I got 3hrs sleep! No regrets whatsoever and nearly one year later PSA' s still undetectable.
My overall goal was hopefully cure as early intervention but also to buy me time so science (immunology) to catch up so if it does return in the future hopefully there will be other options on the table.
Hopefully that answers a few questions but feel free to ask and I sure there will be many as I had!
Best of luck!
Simon
Edited by member 06 Nov 2020 at 15:28
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