My Retzius sparing RARP + NeuroSAFE journey

Hi Appletree

I was stuck with the same issue. When I heard about the Prof Whocannotbenamed on here and his volumes/stats/background it gave me the confidence to go forward with surgery. Yes I went down the Retzius-sparing robotic assisted radical prostectomy with neurosafe. I had it done privately at London Bridge plus the have the latest robotic surgery systems. I was impressed with care and facilities etc although about 90min train journey for me.

My surgery was initially a little more complex as it was thought via Neurosafe to involve the capsule of prostate (focal involvement with the margins) with risk of breaching so the Prof did a 3/4 Retzius and 1/4 alt-retzius to take a cautious approach and remove part of one neurovascular bundle with a wider margin. Thankfully histology results came back a week later and showed all was clear and everything localised inside prostate.

Rather than a supra pubic catheter I had a urethra catheter which was fine once you got used to it. After 15 days this was removed and continence tested. From outset was pretty good and able to stop start albeit very sore. Intermittent leaks/drips occurred over the next few weeks. No problems at all at night apart from one episode where I sprang and leak but I had taken too much water before bed.....lesson learnt and caught it as is leaked into pad. Aside from that I’m now pretty much dry at just about six weeks. I find coffee/alcohol can cause the odd drip but this will improve once the stitches have dissolved I would imagine. 

Erections are getting there. I would say 80/90% now as I had good function before surgery and this is pretty much returning but obviously dry climax. I had a tingle and semi first weekend after surgery so way ahead of expectations. Since the 21st December have been on tadalafil and taking 5mg daily but sometimes just break in half and take 2.5mg but recovery in that department seems very promising.

No regrets at all and histology reported back my Gleason score was upgraded from 3+3 (Gleason 6) to 3+4 (gleason 7) as the Prof predicted. So AS wouldn’t have worked well for me long term I suspect as it wouldn’t have been long until the prostate capsule was breached.

I was home after two nights. 2hrs on train and a walk after that wasn’t hard at all although my gf was helping with the bags. Recovery very much pain and infection free. If the PSAs come back over the next five years <0.1 it will probably be the best thing I ever did.

Good luck with your journey and please don’t hesitate to ask if you need anything.

TG

Hi Appletree

Happy New Year too!

At the very least get a second opinion with a high volume urology surgeon. I feel very lucky I found my surgeon (Professor) by searching ‘Santis’. Saw the Professor was well respected and good stats. Having spoken to a few people on here who have been under his care and have been through the journey plus via my local support group - a guy my age had also seen the professor at London Bridge. After a few weeks researching and talking to various people I had enough information to move things forward to consultation for a 2nd opinion (had been under local consultant urologists for a few years) . When I met the Prof I knew he was exactly the person I would want when operating near critical systems down below. He’s one of the top surgeons in the UK and travels around Europe demonstrating latest surgical techniques. So I figured I had done everything my end to give me the highest probability of a good outcome. To regrets at all and would do it again. 

TG

Edited by member 07 Jan 2020 at 18:25  | Reason: Not specified

Hi Appletree

No problem at all as pleasure to help as been in exactly the same situation.

Its pretty common in the medical community to raise questions about new techniques I think. They lean on the 'long term data' line quite a bit. I was mindful of this hence talking with four separate patients before making my decision. My feeling (non clinical perspective) is this procedure will be adopted across the NHS in due course. NeuroSAFE is going under evaluation with NICE I think at the moment so is a few years off too. Dramatically improves visibility in real time for the surgeon so a more graded approach to nerve sparing can be achieved. 

Its worth checking out the origins of Retzius approach and there are some youtubes of the procedure. Robotic skills are key it seems. The approach come from two globally respected urological surgeons (Team in south Korea and a team in Milan, Italy). They have produced lots of data and the positive impact on post surgical continence is impressive. 

Yes, my big concern too was continence but after talking to several patients who all had good continence post surgery (immediate or a few weeks after) that had been under the prof and then reviewed his stats online I knew I was in good hands.

Ah yes the length issue. Something I brought up a few times with my local urologist and the prof. I even took a pic in the hotel the night before my op to compare. Happy to report in my case I didnt really notice much of a difference at all as very slight. Erect doesn't seem to have taken a hit at all.. Plus the consultants both said usually its around 5% but anything lost can mostly be recovered post surgery (urethra is very elastic) using exercises ie sex if capable of penetrative or a penis pump (not until given the ok for this so as not to stress the new connection between urethra/bladder (anastomosis). 

I had a TPM biopsy back in September 2019. After a 3T mpMRI locally. This only picked up the 3+3 cells in four quadrants. Its a bit hit n miss as you also have to appreciate the MRI's even though have come a long way don't see everything and have their limitations. Plus its sometimes down to the radiologist and their skills in the interpretations. Best radiologist in my view is based out of UCLH and she is very well respected.

I did check out the other consultants but really down to the fact the people I had spoken to had all seen the prof really pushed me down that route. Fantastic chap with real passion for his subject area and his knowledge blew me away as everything he has predicted from pre-op to now has been spot on.

Here is a data site. Just punch in the surgeons name and should come up with the info. Takes a few minutes to get your head around what you are looking at but sinks in eventually :-) https://www.baus.org.uk/patients/surgeons

Edited by member 07 Jan 2020 at 20:39  | Reason: Not specified

Ps I think we did have an MRI with the very well respected radiologist in a private clinic in July 2019. She gave a likert 2/5, which is sort of like Pirads 2. My understanding is that in most cases a biopsy would not have even been suggested with this likert/Pirads score... but his psa was 4.4, way above for someone his age. So I suppose we did the right thing to go ahead with the biopsy...

PS if you go for a second opinion its useful to take an 'infopak'. I took all the letters of correspondence between my local consultant & GP which covered each stage of initial investigation plus results of tests, biopsies. You can ask for the formal results as sent through from the pathology labs plus any scan interpretations. You can also generally ask and get a copy of the MRI scan CD/DVD. I took all this collated information with a summary sheet + Scan_CD when I saw the Prof for initial second opinion. Think it saved him quite a bit of work as he commented on it being the best 'infopak' he had ever received from a patient :-o

Edited by member 07 Jan 2020 at 23:39  | Reason: Not specified

Thanks lots John, it is great that AS is working out well for your friend! 

We looked into Nanoknife as well and I read that a Prof from UCLH also offers it in the UK? 

Wonder if you have read about MRI-guided transurethral ultrasound ablation (TULSA)? Sounds like by going through the penis, this would protect the surrounding tissues of the back-passage in the conventional HIFU method. I don’t know if anyone has any insight into this? Think it is only offered in the US at the moment though...

Hi TG, thanks lots for this. I spoke to hubby and seems like I had a misunderstanding of the word quadrant, I thought it meant one quarter of the prostate. He now says he actually has four quadrants with Gleason 6 but all in the same quarter. Were yours the same or on both sides of the prostate? 

I’m concerned about effect of focal therapy either hifu, or nanoknife or cryotherapy, would have on the back passage and it’s surrounding tissues, whether that would make it difficult for surgery further down the road and causing worse side effects etc. I have read that surgery is possible but with difficulty due to surrounding tissue damage. Wonder if you have any insight into this? Thanks a million!