Anyone been refused nerve sparing?

Hello Mark

I don't know the answer to your question but on a personal level I would say that if you are doubting what you have been told then don't go through with the op on Wednesday until you have the answer/explanation you want.

I would have thought with the scores you have that nerve sparing would have been an option. I'm not an expert but I am sure those who have had the op or planning to will comment for you.

Just be sure in your mind that you do want to go ahead. You are only 54 with a long life ahead of you so no nerve sparing will impact on you greatly. If it's absolutely necessary then so be it but I'd want my husband to have the reassurance that there was no alternative.

Don't go into this op blind or worrying that you might have another choice. IF in doubt put the op off until you are sure.

Was the operation the only choice given to you or was it your decision because you want the cancer out?

Not much help to you I'm afraid, but st least I've bumped your post

Best Wishes

Sandra

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Hi Mark

Sandra hits all the key points I was going to make. See my profile.  I see in your profile re. decision in 4 weeks ? To re-enforce Sandra comments, review all options and take IMHO up to 4 months rather than 4 weeks. You and your partner must be 100% sure you need the best at the time.  This is Intermediary (not low risk as Grade 4 cells present) and both lobes ? (again I assume the 12 cores where not targeted towards one lobe) , maybe others will comment on this.   

My brother has just been diagnosed (he is 69) - see my other posts.  He makes his decision in new year (living in Australia) and had mpMRI so had much more detailed info that we ever did.   Until I see my surgeon in March 2017 (2 yrs post LRP) then I have no idea if the PI-RAD imaging 'matched' up to the post op analysis, or indeed whether I even had mpMRI.   It's only now that I know what questions I could have asked.  That's why I find this forum so informative; a very positive use of the new technologies.         

The dilemma for me is 'advising' my brother re. RT or RP (his surgeon does Open), as he seems to be moving towards RT.

To answer your specifics and some key points:

I had da Vinci RP NNS and have no regrets.  Wife and myself questioned NS and told priority to remove all cancer, I questioned the positioning of the lesions and he drew a few dots in both lobes, which I assume were accurate, lol.  Who knows ?  Research indicates risk of return increases if the nerves left in as I'm sure you know as it appears that micro tumour cells exploit the nerve corridors (I'm no biologist or expert !) Again reading some research I still have no idea if these are present (ie not removed) or develop in other areas and track the nerve bundles.  

I just read the latest research from around the world, in the public domain. (ie good old 'google').  Post op mine was graded as T3.

The positives :  Still 0.01 PSA, (our lab is 2 decimal places) so can't ask for more. Take each year at a time. I've been so lucky 

Incontinence - I was dry within less than 48 hrs - so a huge tick there also.  

No ongoing pain or discomfort.  ED Re. surgery or indeed any other treatments, major impact.  Obviously no semen, so both parties affected.  Also google 'Climacturia'. umm.  All sounds negative eh?  It's not, all have workarounds to some degree. 

Age is irrelevant re. ED, reading many posts, it's your expectation of sexual activity whether 30 or 90, as everyone is different.   All I can add is to make your decision with eyes open.  ie. Nerve sparing,  the odds appear better re. ED recovery, again everyone is different.   I did ask for a compromise,  which sounds a bit odd put in this context, ie appears like a sales dialogue;  can I have one left please  ?  I have full confidence in my surgeon, so whether his personal beliefs override the MDT  or the policy of the NHS hospital is now NNS I don't honesty know.  

Despite NNS,  ED is manageable and work in progress, 22 months post op and things continue to improve, albeit very slowly.

As I said my brother lives in Australia, this article summaries issues quite well I thought https://www.mja.com.au/journal/2014/200/10/prostate-cancer-survivorship-review-erectile-dysfunction-and-penile

Obviously treatment access varies from country to country, as it seems within NHS also.   

I hope this helps ..    all the best

Gordon

Edited by member 03 Dec 2016 at 12:11  | Reason: Not specified

I haven't been refused nerve sparing as such, but was simply told it wasn't possible. My tumour is T3a, Gleason 7. I already have erectile dysfunction which they feel is linked to the PCa.

Right now, I want to give the surgeon every opportunity to get rid of the cancer. If I were in your position, I'd be questioning, but I think I really don't have a choice. My own GP went through everything with me from my hospital reports and so I think the surgeon has reached the correct conclusions for me.

Walter

Edited by member 04 Dec 2016 at 07:26  | Reason: Not specified

Thanks everyone for the replies.

In answer to people saying I have made the decision quick, that was by my own choice. Although everyone is saying I have lots of time, my own instinct is to get it out as quick as possible and I did request treatment as soon as possible. The biggest doubt for me is that the results are not certain and my cancer might actually be worse than realised.

When my surgeon first said he wouldn't offer nerve sparing I questioned this, he then said maybe he could spare nerves on the right hand side (3/6). He then phoned up for the histology of the biopsy and then said no again to any nerve sparing due to proximity to the margins. Then later after there had been an SMDT (meeting about my case) I received a letter saying that the consensus was that nerve sparing shouldn't be offered.

I had wondered how they knew it was close to the margin, but considering what was said here (thanks Lyn!) about knowing the depth of cancer in the cores I think that has answered my question.

At the end of the day I won't compromise curing the cancer to avoid ED so in the light of the discussion here I think NNS is the way to go.

I had initially chosen RT but on reflection I didn't think I could cope with the thought of it failing and ending up with an incurable cancer whereas with surgery RT can be used as another shot at a cure.

I will be going ahead with surgery as although it has been a relatively short time since diagnosis I want to try and get rid of this thing as soon as possible and (hopefully) get on with my life.

Thanks again everyone - I will let you know how I get on.

At the MDT meetings prior to my op 18 months ago , my surgeon said he would save my nerves , whereas the other Uro was adamant the whole lot came out. I opted to save as much as possible because the thought of permanent ED at 48 years old terrified me. Unfortunately my post op results were the worst my hospital had seen for 2 yrs , but this hasn't yet been accredited to the nerves left behind , rather the cancer on my bladder margin and lymph node involvement.
I'm personally not a fan of the " dead men don't get erections " and " the greatest side effect is life " comments , as depending on your personal make-up the after effects of incontinence and ED can be nigh on unbearable and make life feel not worth living. I get many many private messages from men ( mostly the young ones like myself ) who are extremely downbeat--even the ones who had operation success.
However I will say there is hope. I was continent very very quickly and I have fought tooth and nail for erectile recovery which is finally beginning to occur. I have also now twice trialled the new Invicorp25 injection with fantastic results and virtually zero side effects. This can work for men with zero nerves spared also.
My very best wishes to you guys
Chris

Ah yes, the lovely comment that this is the best cancer to get, not helped by all the media reports of famous men who get PCa "but they are fine now"

I got so sick of people telling me about their father/father in law/uncle/golf partner who is fine. Now I say "oh that's lovely to hear. Tell me, how many pads do they go through each day and do they use injections or a vacuum pump when they want an erection?" which usually shocks them. Of course lots of men will not discuss those things - when they are asked how they are, they say "I'm fine"

Hope all goes well..

KRO...

I will give a more full report when I get home. Thank you to you all for all the info, advice and best wishes.

Mark

I can't believe you're posting on the evening of your operation. In a strange way, it makes me feel a bit better about mine on Friday - if you got through it, so shall I.

Heal well.

Walter

Walter

Mark

I was told my op would be NNS and although I was told they were not sparred I do get some stirrings and a about a 70 Per cent swelling without any medication. I do not expect to ever get a natural erection but with chemical and mechanical help I can get a pre op size penis.At 30 months post op things are still slowly improving but as I often say you do not need an erection to have vaginal intercourse, just the right technique a good relationship and double glazing so the neighbours cannot here the noise.

No straining to pass that first motion, another guy on here was taking senna and was still bunged up his GP told him to double the dose. I used senna and movicol, obviously get advice from you GP or Uro Nurse if you have one.

Thanks Chris

I hope no one finds this disrespectful - I'm farting away tonight (had surgery today for those who don't know!) so hoping my bowels will move tomorrow. Hope you're sorted soon mate.

Walter

Edited by member 10 Dec 2016 at 01:40  | Reason: Not specified

Walter,

Let us know how you are getting on when you feel up to it?

Mark

Edited by member 10 Dec 2016 at 06:52  | Reason: Not specified

Walter

Robodick - cool, I will have to ask about that one 😃
Sounds like you have come through well especially if you are already enquiring about ED at this stage

Mark

I saw your post on the catheter pain thread, sounds like you are having a really bad time with yours. Hope you get it sorted soon.

I am feeling a lot better all round today, I havent taken any pain killers at all today and I am feeling fairly comfortable, if they can sort your catheter out you should feel a lot better very soon.

My problem is still constipation, I still havent been and I am on 4 different laxatives!

Mark

Edited by member 10 Dec 2016 at 14:56  | Reason: Not specified

Some instilagel might help with the soreness at the end of the penis, you can get at most pharmacies. Make sure the catheter is fastened to the leg strap correctly and not pulling or straining.

Thanks Chris