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NeuroSAFE/Retzius sparing surgery on NHS??

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User
Posted 11 Nov 2021 at 20:43

Hi everyone


My husband was recently diagnosed with prostate cancer. 


He is 56 years old. Fit and healthy. Not overweight. And like many of you all on here, it has come as quite a shock to the system! He had a PSA of 4.6 and an MRI in September showed Pi-RADS 5. He went on to have a template biopsy which shows a Gleason of 7 (4 + 3) Both lobes of the prostate are involved. He's been given a grading of T2CNO. Bone scan came back this week which was all clear. Thank God!


Looking into treatment options and he's definitely swaying towards surgery. We've been doing our research and looking into the different surgical procedures and reading up on NeuroSAFE and Retzius sparing techniques.


Does anyone know if this is available on the NHS or only privately? Just weighing up all our options


Thanks in advance! 

User
Posted 22 Nov 2021 at 11:25

I have recently undergone a RALP with Neurosafe on the NHS. This was performed by the lead surgeon (I am given to understand) in this field in Hertfordshire. Perhaps there may be regional differences in availability. Retzius (have I spelt that correctly?) saving was never mentioned to me and does not appear in the surgeon's letter to my GP. Frankly, I had never come across the term prior to joining this community. 


 

User
Posted 22 Nov 2021 at 11:46

Yes Andy, it was the Lister in Stevenage. In fact, the surgeon would not perform nerve sparing unless the pathology team were available on the day. 

User
Posted 24 Nov 2021 at 22:14

Robot


i think this is why neurosafe tends to be used in the private setting and in due course is planned for the NHS….the pseudo real time data mitigates some of the risk associated with nerve sparing as gives a clearer picture ref margins. Sadly the anterior area of the prostate tends to be where most tumours start for some reason. I discussed thus with a couple of surgeons….be interesting to understand the pathology of those particular cells and why they seem so susceptible. 


s


 

Edited by member 24 Nov 2021 at 22:15  | Reason: Not specified

User
Posted 24 Nov 2021 at 22:26

Andy


thats spot on. The cave of Retzius is a small area near the prostate that can be accessed without disturbing the critical nerves under the bladder. I think during the procedure, which is technically more challenging, the bladder is inverted to get access to the location. There are a few videos showing the approach on YouTube. I was hoping for mine to be filmed but sadly the recording unit wasn’t operational the day I had my surgery. Her ladyship wasn’t happy as I’d promised a Sunday matinée premier 🤷🏼‍♂️🥴🤭


simon


 

Edited by member 24 Nov 2021 at 22:27  | Reason: Not specified

User
Posted 17 Apr 2024 at 09:07

This is interesting. My husband had a RARP last week in Portsmouth QA hospital and although Retzius Sparing wasn’t mentioned beforehand it would appear he has had it - as his discharge letter says so. The surgeon did say in our pre op meeting that he did things “a little differently” which resulted in better continence outcomes but my husband didn’t expect this approach and so it has come as a nice surprise! I’m having to pinch myself but it most definitely  states in black and white that this is what he has had. 

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User
Posted 22 Nov 2021 at 11:25

I have recently undergone a RALP with Neurosafe on the NHS. This was performed by the lead surgeon (I am given to understand) in this field in Hertfordshire. Perhaps there may be regional differences in availability. Retzius (have I spelt that correctly?) saving was never mentioned to me and does not appear in the surgeon's letter to my GP. Frankly, I had never come across the term prior to joining this community. 


 

User
Posted 22 Nov 2021 at 11:43

Neurosafe is not generally available on the NHS, but The Lister hospital does do it on the NHS sometimes when the right team is all available (probably where peter_lh is referring to).


The reason it's not available in most NHS hospitals is that non-patient facing services such as histology have often been moved off-site to make space for more patient-facing services. Neurosafe can only be performed when histology is located nearby the operating theatre. It's also more expensive because more specialists are involved, but that might pay back on reduced need for ED treatments down the line.

Edited by member 22 Nov 2021 at 11:45  | Reason: Not specified

User
Posted 22 Nov 2021 at 11:46

Yes Andy, it was the Lister in Stevenage. In fact, the surgeon would not perform nerve sparing unless the pathology team were available on the day. 

User
Posted 22 Nov 2021 at 12:04

Thanks. Good to know

User
Posted 23 Nov 2021 at 12:29

Just noticed you asked about Retzius Sparing too.


There are probably around 5-10 surgeons in the UK who do that.


It is available on the NHS from specific surgeons at Guildford, UCLH, and Reading that I know of. There will be a few more places too that I don't know of I'm sure (probably more of the London hospitals).


Retzius Sparing tends to give faster recovery of continence, often immediate. However, at the 1 year post op point, continence is the same Retzius Sparing or not, as non-Retzius Sparing patients catch up later.

User
Posted 23 Nov 2021 at 13:48
We had a member recently who had Retzius sparing in or near Liverpool - I can't remember who it was though.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Nov 2021 at 14:31

Thanks Andy. So no long term advantage. Do you happen to know if it is just the procedure that is different - or is the patient reconstructed/reconnected in a different way that is permanent? 


 

User
Posted 23 Nov 2021 at 16:44
My surgeon, Professor Whocannotbenamedhere used a supra-pubic catheter during my Retzius-sparing surgery, which means the drainpipe comes out just below the navel, rather than out of the urethra.

It does involve another hole in your abdomen, but I’m sure it’s preferable to a pipe hanging out and irritating the end of your dick for ten days.

When I turned off the stop tap on the catheter bag on day nine, I was immediately able to urinate normally, and thus no need for the palaver of flow testing in urology when they carry out the TWOC (catheter removal) under normal circumstances.

Cheers, John.
User
Posted 23 Nov 2021 at 18:21

John


Hope you don't mind me asking , how many incisions did you have. Where were they and how big were they.


Thanks Chris

User
Posted 23 Nov 2021 at 18:47

I really wish I had participated in this forum before my RALP. To be fair, from initial consultation, through MRI, biopsy, further consultations and subsequent procedure, the NHS, on their urgent psthway, have been phenomenal. I even asked the lead surgeon if there was any advantage in seeing him as a private patient and he said no and guaranteed that he would personally do my RALP. However. had I known about Retzius saving. I think I would have gone down  that route, as a private patient if necessary.

User
Posted 23 Nov 2021 at 21:44

Originally Posted by: Online Community Member


Thanks Andy. So no long term advantage. Do you happen to know if it is just the procedure that is different - or is the patient reconstructed/reconnected in a different way that is permanent? 


As far as I know, it's just the route in to dissect out the prostate which is different, but I'm not expert on it.


There's an area called the Retzius Space which was kind of held to have nothing in it, behind the pubic bone, with the bladder above it and the prostate below it. The prostate is usually removed through this in RALP. However, this does do damage to ligaments supporting the bladder, and possibly nerves and blood vessels too. Saving this space does give faster (often immediate) urinary continence.


This is a significantly more complex procedure, so only a small number of top surgeons do it. It's possible that because it's only done by top surgeons, they may be more skilled at other parts of the prostatectomy process too.

User
Posted 23 Nov 2021 at 22:52

Originally Posted by: Online Community Member


I really wish I had participated in this forum before my RALP. To be fair, from initial consultation, through MRI, biopsy, further consultations and subsequent procedure, the NHS, on their urgent psthway, have been phenomenal. I even asked the lead surgeon if there was any advantage in seeing him as a private patient and he said no and guaranteed that he would personally do my RALP. However. had I known about Retzius saving. I think I would have gone down  that route, as a private patient if necessary.



Peter it is less than a month since your surgery, your only problem is incontinence and it is too early to say whether it is anything other than temporary. I can understand incontinence is very distressing, but in six months there is every chance things will be much improved. If you had gone private you would be at least £20k out of pocket and In a year's time your continence level would be the same whichever route you took. 


I would say as you have saved £20k by going down the NHS route (you have been paying national insurance all your life so it wasn't exactly free treatment) you should now spent half of that £20k on incontinence pads, and the other half on beer so you make sure you get good use out of them.


Good luck, keep us informed of how you get on over the next year, it will help future readers make decisions if they can read real stories.


 

Dave

User
Posted 23 Nov 2021 at 23:05
Plus I read in a European Urology report today that the risk of positive margins is slightly higher with retzius sparing.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Nov 2021 at 07:42
I also read that Lyn. Which is why my OH has opted not to have Retzius Sparing. Not worth risking the cancer coming back to have better continence in the short term
User
Posted 24 Nov 2021 at 07:43
I also read that Retzius sparing isn't best used with Anterior tumours so it really depends where your tumour is
User
Posted 24 Nov 2021 at 07:56

Thanks for that Andy. 

User
Posted 24 Nov 2021 at 07:58

....... all that glisters etc? 

User
Posted 24 Nov 2021 at 08:12

Dave - I didn't mention it but I do have BUPA insurance. But at my age, the premiums and excess are getting very expensive and I am not sure I will continue. Hence my decision to take the NHS route and whilst it is clear I have had some second thoughts (Lyn, Robot A, your last comments have somewhat lessened my doubts), so far, I have not been disappointed. I was also keen to be on the NHS for ongoing and possibly long term monitoring. And there was a bonus! BUPA have sent me £2,000 for having the op on the NHS (good value for BUPA). That should pay for the pads and plenty of beer when the great man says I am OK to partake of it! 

User
Posted 24 Nov 2021 at 08:24

I think normal robotic prostate surgery is five laparoscopic perforations, and the supra—pubic catheter made it up to six.


They were about two or three centimetres wide except for a bigger one in the navel where the cancerous prostate was removed.


All went well until some of the “dissolvable” sutures in them did not, and became infected, involving two courses of antibiotics and three visits to the nurse with a magnifying glass and tweezers to try and remove the remaining microscopic stitches.


I understand there are some people for whom dissolvable stitches do not.


Cheers, John.

User
Posted 24 Nov 2021 at 10:06

Originally Posted by: Online Community Member


That should pay for the pads and plenty of beer when the great man says I am OK to partake of it! 



OMG! Why are you waiting? You don't need the okay from the surgeon to have a drink - Bollinge downed a couple on his way home after the op! 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Nov 2021 at 10:07
Bollinge, was there also an entry wound on your perineum?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Nov 2021 at 12:14

Because there won't be any pads or pants capable................. 

User
Posted 24 Nov 2021 at 13:03
Mmmehhh - it is essential that you are drinking lots of fluids
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 24 Nov 2021 at 17:13

No, only 42 needle holes during my transperineal biopsy.


But whilst you are hanging upside down like a bat for prostatectomy, I think they put a giant dildo with sensors on it up your arse to help with the robotic surgery.


I know as I found a photo of it on Google!


Cheers, John.

Edited by member 25 Nov 2021 at 05:36  | Reason: Not specified

User
Posted 24 Nov 2021 at 22:10

John


I felt like a tea bag after that…I guess the ultrasounds probe explains my funny walk the day after 🥸😵‍💫😀


pleased to have dodged the pelvic drain with surgery 🤪


simon 

Edited by member 24 Nov 2021 at 22:17  | Reason: Not specified

User
Posted 24 Nov 2021 at 22:14

Robot


i think this is why neurosafe tends to be used in the private setting and in due course is planned for the NHS….the pseudo real time data mitigates some of the risk associated with nerve sparing as gives a clearer picture ref margins. Sadly the anterior area of the prostate tends to be where most tumours start for some reason. I discussed thus with a couple of surgeons….be interesting to understand the pathology of those particular cells and why they seem so susceptible. 


s


 

Edited by member 24 Nov 2021 at 22:15  | Reason: Not specified

User
Posted 24 Nov 2021 at 22:26

Andy


thats spot on. The cave of Retzius is a small area near the prostate that can be accessed without disturbing the critical nerves under the bladder. I think during the procedure, which is technically more challenging, the bladder is inverted to get access to the location. There are a few videos showing the approach on YouTube. I was hoping for mine to be filmed but sadly the recording unit wasn’t operational the day I had my surgery. Her ladyship wasn’t happy as I’d promised a Sunday matinée premier 🤷🏼‍♂️🥴🤭


simon


 

Edited by member 24 Nov 2021 at 22:27  | Reason: Not specified

User
Posted 17 Apr 2024 at 09:07

This is interesting. My husband had a RARP last week in Portsmouth QA hospital and although Retzius Sparing wasn’t mentioned beforehand it would appear he has had it - as his discharge letter says so. The surgeon did say in our pre op meeting that he did things “a little differently” which resulted in better continence outcomes but my husband didn’t expect this approach and so it has come as a nice surprise! I’m having to pinch myself but it most definitely  states in black and white that this is what he has had. 

 
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