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Anyone been refused nerve sparing?

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User

Posted 02 Dec 2016 at 23:40

Hi.

I am due for surgery on Wednesday. The surgeon has refused nerve sparing. However I have heard a few things that cause me to doubt this decision. Has anyone else been refused nerve sparing and why?

This decision is based on the following results:-

PSA 7

MRI scan clear

Gleason 3+4

12 cores sampled, cancer in 6/6 left, cancer in 3/6 right max volume 40% and 50% respectively

Stage T1c

The argument given to me was that cancer was too near the margin, but since the MRI scan was clear how can they tell this? When I went to see the oncologist about radiotherapy she was puzzled why on these results I wasn't offered nerve sparing. Should I get a second opinion?

Edited by member 03 Dec 2016 at 00:12 | Reason: Not specified

User

Posted 03 Dec 2016 at 07:40

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

****

We can't control the winds - but we can adjust our sails

User

Posted 03 Dec 2016 at 08:28

Originally Posted by: Online Community Member

Hi.

Has anyone else been refused nerve sparing and why?

My stats were worse than yours (see my profile) and I kept asking about nerve sparring, I was told there was too much disease for nerve sparring. A second opinion offered open surgery and possible nerve sparring on one side but no guarantees until he got in there and and a feel round. My MRI showed no spread. As it turned out my margins were positive and I had an extraprostatic extension.

People often comment on here that the only time you know for certain that the surgeon got all the cancer is when the prostate is in the Petri dish and tested in the lab. One member did recently have a procedure where the tissue was checked during the operation.

My surgeon said his job was to get rid of the cancer.

Thanks Chris

User

Posted 03 Dec 2016 at 11:50

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

User

Posted 03 Dec 2016 at 13:12

The decision re whether to leave the nerves or remove them will be partly based on the cores that were removed in the biopsy - they can see how close to the edge of the prostate the cancer is situated. Imagine sticking a straw into an apple and drawing out a thin core of flesh to inspect. If the bruised bit is near the centre of the apple then peeling the skin back, removing the bruised bit and then fixing the skin back in place should be fine. If the bruised bit is near the outside, the skin needs to go along with the bruised bit.

We do have a member on here who changed surgeon because the first hospital recommended non nerve sparing. He had nerve sparing but unfortunately his PSA remained high and he has had to have hormone treatment and radiotherapy in the hope of getting rid of whatever was left behind. Generally speaking, I think surgeons will offer nerve sparing wherever possible as it is better for their stats so if the advice is that they need to go it should be taken seriously. Did you not fancy having radiotherapy instead as at least then the ED is not guaranteed to happen?

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

User

Posted 03 Dec 2016 at 19:35

Mark

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

User

Posted 03 Dec 2016 at 20:58

one of the reasons for questioning why nerve sparring was because the MRI showed nothing. MRI scans don't always show what is really there as evidenced by the biopsy. I would have said to the surgeon to see when doing the op whether he/she can leave the nerve bundles as he/she believes one or both are unaffected by cancer. 6/6 side doesn't look promising though.

Barry

User

Posted 03 Dec 2016 at 22:19

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.

User

Posted 04 Dec 2016 at 07:29

Mark

You're in on Wednesday, I'm in on Friday. I can't imagine what life is going to be like post surgery. I don't underestimate the challenges, but will do my best to enjoy and embrace life.

Best of luck for Wednesday.

Walter

User

Posted 04 Dec 2016 at 09:08

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

User

Posted 04 Dec 2016 at 10:00

Chris

I appreciate your honesty. The thought of life being less than 100% a man is very unappealing to say the least. But I have two kids and want to live, but I do fear depression etc as a result of the after effects of the surgery. I am guaranteed no nerve sparing.

Someone told me at the start of the journey that prostate cancer was a good one to get, if you're going to get any. There is no such thing as a good cancer, and the more I have learned about this disease the more nasty I believe it is.

Until I have walked the post operative journey, I just can't put myself in those shoes, and I don't underestimate what my new reality will be like.

Trying to remain upbeat until surgery on Friday.

Walter

User

Posted 04 Dec 2016 at 10:31

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"

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

User

Posted 04 Dec 2016 at 12:51

Thank you all, and good luck walter. I had noted when your operation is due. I am terrified myself and just want to get it over and done with. I think surgery with the option of radio therapy afterwards gives me the best chance of long term survival.

I think I will be happy if I get full continence back, ED I will have to deal with as best as possible.

Best wishes with your op, see you on the other side, we will have to compare notes.

User

Posted 06 Dec 2016 at 01:56

Good luck today Mark..

Hope all goes well..

KRO...

User

Posted 06 Dec 2016 at 17:10

Originally Posted by: Online Community Member

Great description Lyn. I never was told anything about the cores etc. It has often crossed my mind about whether my surgeon chanced leaving my nerve bundles for his SE results.

Bri

User

Posted 07 Dec 2016 at 22:14

Thank you KRO. All done this morning at 9:00, lying in bed in hospital, fairly comfortable, operation went well according to the surgeon, only took two hours!

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

User

Posted 07 Dec 2016 at 23:32

Hi Mark

All the very best. Keep the bowels moving and pace yourself.

Gordon

User

Posted 07 Dec 2016 at 23:42

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

User

Posted 08 Dec 2016 at 06:32

Gordon - will do thanks.

Walter, the team were great here at putting me at ease before the op. As soon as I came round I was in quite a bit of pain, but they were on to that straight away, asking me where the greatest pain was, and administering the necessary drugs. The pain was under control within 10-15 minutes.
They let me phone my wife within 30 mins of coming round! I was very groggy mind and speaking to the wife last night she didn't even recognise my voice at first 😂

Best of luck for tomorrow, try not to get too anxious, these people really do know what they are doing so there is no need to worry (easier said than done - I know). My experience (so far) has been positive.

Again all the very best of luck, and let us know how you get on.

Mark

User

Posted 08 Dec 2016 at 23:00

Mark - hope your recovery is going well. My overnight bag is packed. To be at hospital at 6am. What a strange end to the year. Did they spare any nerves in the end for you?

Walter

User

Posted 09 Dec 2016 at 04:40

Hi Walter,

Good luck. No there was never any intention of nerve sparing. I am home now, which is nice, however despite saying they would not send me home until I had performed a bowel movement, they have. I am currently working on that,

I am sure all will go well - see you on the other side.

Mark

User

Posted 09 Dec 2016 at 07:00

Originally Posted by: Online Community Member

Hi Walter,

No there was never any intention of nerve sparing.

Mark

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

User

Posted 09 Dec 2016 at 14:18

Thats good to hear Chris, there is hope for me yet. I must admit I didnt know how I would take nns and still dont because it is such early days. I was thinking of the vacuum pump as somehow the thought of injecting into the shaft of my penis wasnt appealing.

I understand though it is rare to have any erectile function after nns, so in that respect you have been lucky. From your profile though you havent had much luck in other respects. I hope all your problems get fixed.

I havent really tested whether I have any erectile function left, I am still sore from the op and dont fancy an erection while catheterised anyway!

Update on constipation, I had the op wednesday first thing, still havent been Thursday afternoon. Problem for me is that I have always suffered constipation anyway, so this is nothing unusual. I am trying movicol, senna, lactulaose and prune juice!

I think when I finally do go I will have to evacuate the house.

Cheers

Mark

User

Posted 10 Dec 2016 at 00:13

Mark

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

User

Posted 10 Dec 2016 at 01:36

Mark it would be a b****y miracle for you to get an erection at this point - I think the woman (or man) in your life is safe right now

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

User

Posted 10 Dec 2016 at 06:49

Walter,

Good to hear from you, I trust the op went well! I still havent had a bowel !movement , plenty of farting myself. Three days without going is not unusual for me, the unusual thing is the amount of laxatives my body has managed to resist!

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

User

Posted 10 Dec 2016 at 10:00

Mark

Just met one of the surgeons - no nerve sparing, but told I would be eligible or penile implants because of my age if all else fails. A robotic willie! What a perk!

Walter

User

Posted 10 Dec 2016 at 11:33

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

User

Posted 10 Dec 2016 at 13:52

Mark

My catheter is killing me - how's yours?

Robodick - look up penile implants - there's one where they put a pump in your scrotum. Push the button and hey presto. When you've had enough, you deflate yourself. I think I'm entitled to it if the injections don't work.

Walter

User

Posted 10 Dec 2016 at 14:55

Catheter is horrible. When I walk around I shuffle around like a 100 year old, its uncomfortable rather than painful though, a bit sore at the end of my penis at times.

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

User

Posted 10 Dec 2016 at 16:45

Mark

Just to clarify I usually describe myself as "supposedly" NNS. I think logic would say if the nerves have been removed you are unlikely to get an erection or movement. My surgeon said either some of my nerves may have survived and there is a network of nerves that may be making a connection of sorts.

In my opinion think long and hard about implants, I believe it is a one way journey. Give yourself lots of time to recover, Lyn's OH is an example of how long recovery can take.

Thanks Chris

User

Posted 10 Dec 2016 at 16:51

Guys

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

User

Posted 10 Dec 2016 at 16:56

Chris,

Don't worry, it would be a long time before I even considered anything like implants. My first priority is to get continent and test whether there is any erectile function left at all.

I was concerned reading on here about penile shrinkage. At the moment there appears little if any loss of size, but having read some threads on here this could come later. Also, of course, I have no idea how it has affected my erection size.

Mark

User

Posted 10 Dec 2016 at 17:03

Loss of length usually apparent as soon as the swelling goes down and is linked to how much urethra was removed. So if you had a long enlarged prostate of 2" that would have an immediate impact. Some men are lucky to only lose a little bit of urethra or the bladder just settled into a lower position than before.

Loss of girth comes later as the cells die off through lack of oxygen if erections aren't happening.

The pump can help pull the bladder into a lower position and draws oxygen into the cavernous cells to keep them healthy.

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

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