nerve sparing is it worth it?

User

Posted 16 Nov 2016 at 09:03

I gather that from the removing all of the prostate point of view then non-sparing is easier.

But so many men here that have had sparing surgery still have ED.

How often is it successful?

I am worried about penile atrophy, but also more worried that my pussy cat PCa will grow into a tiger (family history suggest it may).

I left the decision to my consultant, but and now thinking of instructing him to do a non-sparing.

Good luck to all that find themselves here.

Nigel

User

Posted 16 Nov 2016 at 18:37

Hi both
This forum doesn't have many rules but naming surgeons and other medical staff is an absolute no-no. The moderators will delete if necessary but perhaps best to edit your posts yourselves? Initials are okay.

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

User

Posted 16 Nov 2016 at 10:06

N

I would hope you surgeon will do what is best to remove the cancer. I kept asking my surgeon if he could nerve spare, and he always came back with" my priority is to remove the cancer"

Thanks Chris

User

Posted 17 Nov 2016 at 00:19

Hi Nigel
I took consultant advice and do remember should I insist on changing. Wife and I discussed and decided % wise we must aim for cancer cell removal as priority. Nerves do regrow so we remain positive. Intimacy and sex are very different and more than one way to skin a cat as someone one else said on this forum. We are grateful that I was fully continent after just 1 day. Natural and spontaneous erections would be icing on the cake and we accept are no longer achievable. However things are progressing very slowly in the right direction. Ie specifically in the last month. Ie 20 months post RP I have had 2 nocturnal erections and woke up. Yes ; lol I thought I was dreaming. So some nerve impulses must be getting through. Hopefully things keep progressing.
.. not sure if this helps you make your decision or not though.

Gordon

User

Posted 17 Nov 2016 at 20:27

Hello again Nigel. The best source of advice for the effects of nerve sparing or non must be your medically qualified team. It's too important to leave to anecdote or assumption.

User

Posted 17 Nov 2016 at 22:14

Hi SDB,
You are quite right, I have lived my professional life quite successfully always flowing the advice of experts.

Now retired with PCa I have let my emotions and some fear cloud my decision making.

Many thanks to everyone, I have now gone back to my original decision of letting the surgeon make call on the day, rather than insisting on non-sparing. I feel comfortable with that.

Good luck to all,
Nigel

User

Posted 20 Dec 2016 at 20:59

I had my catheter removed today and do am battling incontinence this evening. A wee bit of leakage, but it's been very manageable thus far. I had total non nerve sparing surgery. I don't know how I'll feel in a few weeks about it all, but my surgeon was clear before the operation that nerve sparing was not going to be possible. I told him to save my life. At 46, a future of erectile dysfunction is undesirable to say the least but, tonight, genuinely, I'm happy with my decision.

W

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User

Posted 16 Nov 2016 at 10:06

User

Posted 16 Nov 2016 at 10:24

NHS statistics say 90% of men who have nerve sparing will be able to get an erection at 12 months post op either naturally or with mechanical or chemical assistance. That doesn't necessarily mean that they have enough for penetration. Some surgeons have fantastic success and some lie. Our surgeon says that lots of patients lie to him and claim they have recovered but then their wives / partners say different. Our surgeon also reckons the true figure is that about half of men recover natural erections. What you don't know yet is how the emotional aspect will hit you - John does not have physical ED anymore but his head is all over the place which means he often can't perform.

Nerve sparing definitely increases your chances of recovery and your surgeon won't do it if he gets in there and thinks the nerves need to go.

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

User

Posted 16 Nov 2016 at 10:40

I had double nerve spare at 48 yrs old. I am 17 months post op and think I am JUST starting some natural recovery. I respond well enough to pump and tablets and injections to enable penetration.
It all depends on your wishes really. I didn't want the op I was so desperate not to be impotent. But the surgeon talked me into it saying my nerves would be spared and my age would allow recovery. When I saw another Uro after surgery he said that he voiced that everything should be removed at the MDT meeting but was overruled. My post op results are bad and I'm incurable now , but maybe not because of the nerves. I kind of rue the day I felt forced into surgery as it failed , but having said that , if I was in the position I'm in now and undetectable PSA I'd be quite happy. As it is , I'm a bit of a mess mentally and physically . I wish you the best
Chris

User

Posted 16 Nov 2016 at 15:43

Hello Nigel. I'm approaching 12 weeks after a non-nerve sparing robotic procedure, and I recognise the dilemma you're facing. Even if all surgeons have a professional obligation to treat cancer removal as the first priority, they differ in their interpretations of the balance of risk. 'League tables' and other methods of comparing surgeons perhaps don't help.

I am very lucky. I have good functional recovery so far, and from what I understand that's unusual but not completely exceptional. Some estimates suggest up to 15% of men having non-nerve sparing procedures recover some function, though of course the degree of recovery varies.

Good luck making your choice. It's difficult to be objective, but with good research from reliable sources you can at least participate in the process and make your priorities known.

User

Posted 16 Nov 2016 at 16:26

Hi Nigel

I was told that nerve sparing is offered if all the signs indicate that the cancer is contained within the prostate. I read however that cancer cells could be left behind in the saved nerves. I had verve sparing surgery 5 weeks ago and I now have ED but am in control of my continence, which other than getting rid of the cancer was my main priority. I will endeavour to takle ED and shrinkage issues next.

Good luck with your choice and have no regrets once you have made it.

Brian.

User

Posted 16 Nov 2016 at 16:43

Hi Brian,
That was my worry. I see you are quite local to me did you have your op at the Churchill in Headington Oxford?
I was also offered the trial that you are on, but I noticed that they weren't keen if you had been on other trials, I did loads when I donated platelets.

Thanks to the others for there replies it is helping me come to a decision.

Good luck (we all need it)
Nigel

User

Posted 16 Nov 2016 at 16:51

Hi Nigel

Yes my op was performed by Prof F.H at the Churchill Hospital. We are lucky to have two really top surgeons he and Mr P.S.. The nursing staff in the urology ward are also fantastic.

Best wishes.

Brian.

Edited by member 16 Nov 2016 at 19:12 | Reason: Not specified

User

Posted 16 Nov 2016 at 17:02

Hi Brian,
I recently retired from the Medical School in Oxford, and know Freddy, he is a fantastic chap. I have been under the care of " P S" also a top bloke.
Good luck to all.
Nigel.

User

Posted 16 Nov 2016 at 18:37

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

User

Posted 17 Nov 2016 at 00:19

User

Posted 17 Nov 2016 at 15:14

Hi Gordon
That's encouraging, I seem to be thinking the same way as you.
I had assumed that once the nerves were cut, that was it. But the physio suggested that nerves can regrow, and a good penile rehabilitation program may help.
Many thans,
Nigel

User

Posted 17 Nov 2016 at 15:28

Less than 3% of men that have non-nerve sparing surgery can achieve natural erections and the assumption has to be made that some nerves were left behind. They can't regrow if they aren't there but it is true that burned or bruised nerves can sometime repair themselves. Viagra etc do not work for men with no nerves so injections, pessaries and/or the pump are best options.

Robgsr - did you have nerve-sparing or non-nerve-sparing ... it isn't clear from your profile?

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

User

Posted 17 Nov 2016 at 16:37

I would just like to add , nerve-sparing or not , get using the pump from approx 8 weeks post op and use it EVERY day for exercise and expansion and extension and just to keep the fella happy and healthy. I never really used it too much for actual sex purposes , but I've rarely missed a days exercise in 17 months
Chris

User

Posted 17 Nov 2016 at 17:06

Many thanks Lyn and Chris,

I am beginning to think I am over thinking this. I think I will just let the surgeon decide.

I went to my GP and mentioned the pump he had not heard of using it for penile rehab. But he did say that if the hospital would not prescribe one he would, as it was a good idea.

I have a feeling he will use me to plug holes in his prostrate treatment knowledge.

How soon after the catheter comes out can you start using it?

Good luck to all

Nigel

User

Posted 17 Nov 2016 at 17:41

Hi Nigel

I was given a leaflet for a somaerect pump from imedicare by the physio dept at The Churchill. It says you should not start using the pump until 8 to 10 weeks post surgery. You must give the stitching of the urethra to the bladder time to heal. I am going to discuss this with my GP on 28th Nov.

Brian.

User

Posted 17 Nov 2016 at 17:49

Hi Brian,
I was given the same leaflet, I must have missed that bit.
Did she demonstrate the pump to you? (just on my hand), I found it quite surreal.
After the description of penile atrophy I was quit eager to know more.

Good luck all.
Nigel

User

Posted 17 Nov 2016 at 18:01

Hi Nigel

The young lady demonstrated it on the back of my hand and went into a lot of detail! The conversation did get some getting used to. It was all explained by 2 young ladies younger than my own daughters! I am still laughing about it and I soon realised what a wonderful job they were doing.

Good luck for 1st of December.

Brian.

User

Posted 17 Nov 2016 at 18:46

Just to add my two penneth. I am now Two and a half years post op.I was supposedly non nerve sparring but still get tumescence of the penis, but sadly no standing to attention. My surgeon said it is possible my network of nerves have made a new connection or were not in the "normal" location.
My on going stricture has meant the use of the pump has been quite rare but when I have used it I can still get a pre op length and girth. There was a suggestion that use of the pump might be aggregating the stricture, so follow the advice of waiting for the joint to heal.
I have been prescribed daily sildenafil and although it does not work as it would with a fully nerved/ complete male it has helped keep my penis healthy, exercise of the penis has probably also helped to maintain the health of the penis.

Finally,You do not need an erection to have intercourse and we have mastered the technique of flacid intercourse.

All the best for your treatment and recovery.

Thanks Chris

User

Posted 17 Nov 2016 at 20:27

Hello again Nigel. The best source of advice for the effects of nerve sparing or non must be your medically qualified team. It's too important to leave to anecdote or assumption.

User

Posted 17 Nov 2016 at 22:14

Hi SDB,
You are quite right, I have lived my professional life quite successfully always flowing the advice of experts.

Now retired with PCa I have let my emotions and some fear cloud my decision making.

Many thanks to everyone, I have now gone back to my original decision of letting the surgeon make call on the day, rather than insisting on non-sparing. I feel comfortable with that.

Good luck to all,
Nigel

User

Posted 17 Nov 2016 at 23:08

Originally Posted by: Online Community Member

Robgsr - did you have nerve-sparing or non-nerve-sparing ... it isn't clear from your profile?

Hi Lyn

I had non-nerve sparing. I will update profile.
Gordon

User

Posted 18 Nov 2016 at 07:46

Interesting, Rob. I too had non-nerve sparing as did at least one other forum member who has had some return of erectile function.

My urologist said it can happen where function was strong previously, and I specifically asked if it could mean an incomplete removal of the tissues. He looked offended and showed me the record that included both nerve bundles. It's therfore an incorrect assumption to imagine return of function must equal a botched or incomplete procedure.

It's clear like in lots of neurological physiology that there are gaps in understanding. People recover all sorts of functions after nerve procedures, and add to that we're all slightly anatomically different. And chemicals most definitely help.

Edited by member 18 Nov 2016 at 07:58 | Reason: Not specified

User

Posted 19 Dec 2016 at 22:44

Hi Nigel.
I see from your update post-op that you were getting erections straight away. Glad the surgeon spared your nerves - that should be possible with Gleason 6. I hope your continence is improving. It will do so with time and exercises.
Best wishes,
Henry

User

Posted 19 Dec 2016 at 23:22

Henry,

It is my understanding that it is not just a question of the assessed Gleason score, which could be undergraded anyway but even more importantly how extensive the spread is. Is there a reason why I am wrong in this?

Barry

User

Posted 20 Dec 2016 at 07:29

I'm not sure the Gleason score is important in nerve sparing , yes it just depends how near the cancer is to the nerve bundles. If it is seen or thought to be near the bundles then they won't save the nerves or advise against it. A friend had very rapid erectile recovery , meaning the nerves were very undamaged. Unfortunately this means more prostate tissue is left behind which can be a problem. Sure enough 18 months on he is needing salvage RT. Us guys desperately don't want to lose function , even more so us " younger " ones , but I guess sense wise they should take the lot out

User

Posted 20 Dec 2016 at 07:49

Barry . I agree.

User

Posted 20 Dec 2016 at 20:59

User

Posted 22 Dec 2016 at 08:08

Hi Chaps, 3 weeks post op. Almost full erections . Not rigid enough for penetration .
I had an extra blood vessel that had to be preserved, and an adhesion to the bowl.
Slightly leaky just before and after I have a wee.
I have had six blocks caused by blood clots, but managed to pass them all with out intervention.
But I am still getting lots of abdominal pain. I have had my post op appointment brought forward as the pain is thought to be unusual.
Good luck to all.
Nigel

User

Posted 22 Dec 2016 at 15:26

Wow
Erections at 3 weeks !! I'm just getting erections back at 18 months post op but only with Cialis.
I still have abdominal pain now in my bladder area each time it's full. Also if I need a poo. I've been told it's likely adhesions but very rare. No one wants to take responsibility for it , but it's really getting me down. Pain each and every day becomes very depressing. My treatment is ongoing though so they may find something yet. I know I have cancer left at bladder neck and in my lymphs.

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