Hi Eli
I’ve been on a similar journey and it’s a head spinner.
Check out my thread as might help with context around the surgical route. I’m lucky as found a high volume surgeon who is a pioneer in the field….
Be mindful that with post surgery histology ~45% of Gleason scores are upgraded. In my case as I was Gleason 6 (3+3) post biopsy with all 4 quadrants of prostate involved and some tumour close to breaking out from the prostate capsule.
Options presented to me were active surveillance or surgery. Was also told there was not urgency. I went away and spoke with my ex who is an immunologist in this field, read lots of research online about type 3 tumours and probability of METS etc Plus did some digging in terms of high volume surgeons and spoke to folks who had been on a similar journey.
In my case my Gleason 6 probability of upgrade was around 60% and it’s turned out just that as post surgery histology came back as Gleason 7 (3+4).
Plus looking at fairly recent research it would appear even type 3 tumours can migrate although less so that more advanced types. In my case I decided to get it out without delay…..and I’m pleased I did as it was very close to breaking out of the capsule and being classified as more advanced had I waited.
Post biopsy I spoke to a number of post op patients that found a high volume surgeon and had very good results with a surgical approach known as ‘Retzius sparing’…basically the surgeon avoids disrupting as much of the nerves around the bladder as possible which helps with early return of continence. Plus NeuroSAFE which uses real time pathology whilst you are in surgery to determine safe margin so there is an opportunity to preserve the nerves associated with erections should it be safe to do so. It’s worth checking re: NeuroSAFE as I think this is only available privately although some NHS sites are trialing it as it’s under review with NICE.
to date I’ve had an outcome that exceeded my expectations. Continence pretty much normal but I do get the odd drip or squirt every few months mainly after a barrel of beer. Nocturnal continence almost 100% Had three mishaps in three years….two after a loads of beer and one fairly random which was more of a leak. Wine mitigates the first two :-)
If you choose to go down the surgical route I recommend checking out Retzius Sparing Robotic Assisted Radical Prostatectomy + NeuroSAFE. Find a high volume surgeon who is a ninja in their field to give you the best chance of a good outcome.
I have no regrets and 2yrs 8months after surgery (Guys Cancer Centre in London)as living a normal life doing lots of weight training at the gym and never give my bladder a second thought other than having a tactical pee beforehand. I’m massively fortunate in having found a pioneering Professor to do the work.
On the erection front I’m lucky as can have penetrative sex without medication but if tired I just pop 2.5mg tadalafil to help with the last ~20%
Best of luck and please feel free to ask any questions that you might have.
Simon
Edited by member 26 Jul 2022 at 07:49
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