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Nerve sparing specialists on NHS

User
Posted 20 Jun 2023 at 13:09

Hi all

I was recently diagnosed with locally advanced prostate cancer (T3a, N0, M0).

I know my tumour is pressing against the prostate capsule wall, and so nerve sparing expertise is important to me in my choice of surgeon.

I'm also familiar with Neurosafe as technique to look for cancer in tissue at the margin of the prostate.

 

For this reason, I've asked for a referral to (Name removed by moderator) at the Lister hospital in Stevenage, as they offer Neurosafe on the NHS.

Do people have any thoughts on this choice/logic? Are there other surgeons I should be considering?

Thanks

Sean

 

 

Edited by moderator 20 Jun 2023 at 13:17  | Reason: Not specified

User
Posted 21 Jun 2023 at 15:01
Twitching your penis has nothing to do with the nerves that produce erections.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jun 2023 at 15:14

"and I am not sure how much can be posted in this forum but I can say that try some experimentation"

I don't think there is anything you could post here that hasn't already been posted 20 times before! The only thing you can't do is use offensive or discriminatory language. There is a whole section of the forum devoted to sex - try threads like mine - "one wife's story of ED" or some of the men's threads like 'erecting the erection' 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 20 Jun 2023 at 16:51

Lister is the only place which does neurosafe on the NHS as far as I know. Some other hospitals have done it as part of a trial on the NHS, but you get randomly assigned to neurosafe or not, and you won't be told which you got.

Obviously, it depends where in the prostate it's against the capsule wall, but having a consultation with a surgeon who does neurosafe is probably the best way to get an idea if it's likely to successfully save the nerves or not. Neurosafe is not a magic bullet to save nerves - it's just that they do it nerve sparing to start with, and then check for negative margins. If the margins are positive, they still have to take the nerves too.

Another option would be to consider radiotherapy - I chose it partly for this reason (I would not have been nerve sparing even at Lister which is my local prostatectomy hospital anyway). 53 would be considered to be quite young to have radiotherapy - I had it at 57, and so far (4 years later), I'm very pleased with the result on that front.

User
Posted 21 Jun 2023 at 12:31

I had my surgery at Lister 6 weeks ago, they are a very good centre. I had only one side nerves spared, I’m virtually identical in terms of age and stage as you. Two very good surgeons there, both as good as each other I’d say.

I was dry straight after the catheter came out, that side was excellent, I do have ED but early days yet, however there is absolutely no movement down there at present and if I’m honest I don’t hold much hope for it getting better, not sure how effective having one side spared is

User
Posted 21 Jun 2023 at 12:49
Just a quick question if I may - if you have the nerves spared, can you twitch your penis? I'm waiting for my post op consult to see if the surgeon was able to spare the nerves but I have noticed that I can twitch it and I don't know if those are the same nerves that may eventually generate an erection?
User
Posted 21 Jun 2023 at 13:52

Can’t say I can twitch ( or if I ever could pre op days) but certainly I had absolutely no issues ED wise pre op. It could be a sign, I’m not sure, I just tried to see if my thing would happen but nothing. Also, very weak (almost no existent) dry orgasm. Really is a poor outcome for that side of things.

I’m surprised you are having to wait for the  pre op assessment, my surgeon told be straight away that only one side had been spared, did you ask?

User
Posted 21 Jun 2023 at 13:59
Thanks - ok, maybe that's a positive sign then as my orgasms are quite positive too.

This is my first consult with the surgeon since the operation (at 6 weeks) - she popped her head around when I was having the catheter removed but I didn't think to ask about any nerve sparing and there is nothing written in the surgeons notes (I live in France so our system is slightly different insomuch as we get to see all the scans/notes/prescriptions etc in the online portal).

User
Posted 21 Jun 2023 at 14:13

Any links to a resource as to how a sex life might work with ED and how orgasm might be achieved?

User
Posted 21 Jun 2023 at 15:01
Twitching your penis has nothing to do with the nerves that produce erections.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jun 2023 at 15:05

Originally Posted by: Online Community Member

Any links to a resource as to how a sex life might work with ED and how orgasm might be achieved?

I haven't found any online resources so far and I am not sure how much can be posted in this forum but I can say that try some experimentation - if you can do it yourself, bearing in mind that the nerves at the end of the penis haven't been affected, then you can instruct your partner. We have found that having an open mind and being willing to experiment has helped enormously - leaving old habits behind was the first step forward.
Oh, and being willing to laugh about it when it doesn't quite work out :)

User
Posted 21 Jun 2023 at 15:06

Originally Posted by: Online Community Member

Any links to a resource as to how a sex life might work with ED and how orgasm might be achieved?

More info needed, Sean. What have you tried - viagra, cialis, levitra? Injections like caverject or invicorp? Do you have an ED nurse supporting you? Do you have a vacuum pump and do you use it daily? 

Re orgasm - you do not need an erection to achieve orgasm. You can masturbate a flaccid penis using plenty of lube, and / or by oral sex if you have a partner

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Jun 2023 at 15:06

Originally Posted by: Online Community Member
Twitching your penis has nothing to do with the nerves that produce erections.



Spoilsport!!

:) :) :) 

User
Posted 21 Jun 2023 at 15:14

"and I am not sure how much can be posted in this forum but I can say that try some experimentation"

I don't think there is anything you could post here that hasn't already been posted 20 times before! The only thing you can't do is use offensive or discriminatory language. There is a whole section of the forum devoted to sex - try threads like mine - "one wife's story of ED" or some of the men's threads like 'erecting the erection' 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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