To save or sacrifice nerves?

User

Posted 26 Oct 2017 at 20:59

Hi. We saw the consultant today and agreed to go ahead with the Robotic Assisted Prostatectomy. The only problem we now have is to go for nerve sparing risking a recurrence or sacrifice them on both sides. ( The surgeon doesn't believe in saving 50%,) Problem is the grade 4 Gleason is very close to the nerve bundle on one side and he likes to take a wide margin.We believe the surgeon to be an excellent one and trust he is being honest and not trying to shorten the length of the operation or making it easier for himself.

Oh for a crystal ball to know the true risk of leaving them. Is it really that bad to lose them and what that entails. Still we've probably got a few weeks to decide.😞

P.S. We thought it ironic when one of the urology patients got called in before us whose name was/ or pronounced by the nurse as " Mr Stiff".😀

User

Posted 27 Oct 2017 at 02:30

I think most men would trust the surgeon to make the decision when he is inside but follow the request of the patient where the surgeon feels there is doubt.

Barry

User

Posted 26 Oct 2017 at 22:05

Is it really that bad to lose them? Well in a way yes, it means that you know from the start that he will not be able to get natural erections* and will have to hope that injections or mechanical aids work for him. On the other hand, you could save both nerve bundles and still find that he is totally impotent and has to rely on tablets, injections or pump. Nerve-sparing surgery does not guarantee erections - it only increases your chances.

You have to make your own decision but personally, I would prefer to reduce the risk of not getting it all and live with the certain knowledge of needing help with erections rather than risk needing further treatment because some cancer was left behind and find he can't get an erection anyway.

*There is a member here who has regained natural erections after non nerve sparing but this is extremely rare and the urologist thinks that possibly a few nerves were left behind.

Edited to say that tablets (viagra, Cialis etc) don't work for men with no nerve sparing

Edited by member 27 Oct 2017 at 14:44 | Reason: Not specified

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

User

Posted 27 Oct 2017 at 01:35

At the age of 46, I had non nerve sparing surgery. Obviously, this wasn't out of choice - my urologist said it was absolutely necessary. He had no doubt in his mind. On the morning of my surgery, I told him to do whatever was necessary to keep me alive. I have no regrets about the decision, but, at the same time, it is devastating. Invicorp 25 injections work for me, but I hate having to use them.

Ulsterman

User

Posted 27 Oct 2017 at 08:24

Peggles

""*There is a member here who has regained natural erections after non nerve sparing but this is extremely rare and the urologist thinks that possibly a few nerves were left behind.""

The above may be referring to me. Just to clarify, I do get a very usable tumescence / swelling of the penis but sadly not an erection. With aids I have achieved 100 percent pre op size but never got it to stand to attention.

My number one thought on diagnosis was nerve sparring and keeping my sexual function, my consultant's number one thought was to get rid of my cancer.

Our sex life is now different and at times even more exquisite than before the surgery.

Best wishes for the future.

Thanks Chris

User

Posted 27 Oct 2017 at 13:55

Hi Peggles,
I noticed my manhood had reduced in size after the robotic surgery, it's the libido that dissapeared overnight is the strange thing, the desire for OH was no more, I took the tablets Cialis(tadalafil) 25mg which gave me a headache & my eyes did not focus well, however it gave me a small erection, I take them occasionally now.

Good Luck

James

User

Posted 28 Oct 2017 at 00:25

Pete, do you do anything at all (masturbation, a vacuum pump?) to make sure that your penis is engorged regularly? 'Use it or lose it' is a real thing I am afraid - if your penis does not get engorged regularly, the cells die off and can never be brought back which means if you did regain erections they would be small. Google 'penile atrophy' for more information.

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

User

Posted 28 Oct 2017 at 14:59

Getting an erection or having an orgasm doesn't increase testosterone or release prostate cancer cells! If it did, the NHS wouldn't allow you all free ED treatments and you would all be on bromide for life!

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

User

Posted 28 Oct 2017 at 20:10

The surgeon told me pre-op I'd need tablets which I've got but only used one to little effect, except some strange aches.

I haven't told anyone about my op. You can go into hospital for 2 days, no-one knows, except my wife, and you can go shopping the next day. There is a chance there will be no signs of illness for several years, if at all, beyond old age.

User

Posted 28 Oct 2017 at 20:47

Yes James, there would be ructions if it was found that stimulation increases the likelihood of faster recurrence. Doctors spend their time trying to make us mentally comfortable while being realistic. I still think it's a possibility as the illness is hormone sensitive. But I don't know if stimulation relaxes a build up and so reduces testosterone, it seems possible.

I think I must have high levels of testosterone as I started shaving young and lost and gained hair faster than most. Although I don't really know.

I don't want to hi-jack Peggles thread so won't post on this anymore.

Regards Peter

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User

Posted 26 Oct 2017 at 22:05

Edited by member 27 Oct 2017 at 14:44 | Reason: Not specified

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

User

Posted 27 Oct 2017 at 01:35

User

Posted 27 Oct 2017 at 02:30

I think most men would trust the surgeon to make the decision when he is inside but follow the request of the patient where the surgeon feels there is doubt.

Barry

User

Posted 27 Oct 2017 at 08:24

User

Posted 27 Oct 2017 at 13:55

User

Posted 27 Oct 2017 at 18:52

Thanks everyone for you helpful advice.

Ultimately we know it has to be his decision.

Lyn.I am with you in that I would rather increase the chances of getting it all rather than risk radiotherapy later which may or may not work and would fry the nerves anyway. In some ways I wish the consultant hadn't given him any choice but reading between the lines I think he would be happier sacrificing them.
Tony at the moment is leaning towards them going but I know it's really difficult for him.I have told him I'll support him whatever he decides.

Trebor. The consultant did tell us the flaccid penis length would shorten.They take the piece of urethra that runs through the prostate out with the prostate. About 1-2 cm so I suppose that's how the shortening happens.

Best wishes
Ann

User

Posted 27 Oct 2017 at 23:27

I was told one side would try to be spared but after little reaction post op another surgeon told me they can only try and it can't be guaranteed as they have to peel it away. 9 months later there seems to be a small reaction but nothing resembling an erection. Although it hasn't changed feeling. Personally I don't care much, they could take the whole lot off if it increased chances of survival. Some people are limp all over.

Also post op mine seemed smaller and I thought it was because they'd removed some pipework. But now I think it's actually bigger, and I'm not bragging. Having a big engine is little use if it won't start. I'm not taking any treatment as I think it will improve, perhaps foolishly optimistically.

User

Posted 28 Oct 2017 at 00:25

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

User

Posted 28 Oct 2017 at 11:26

Interesting comment, the doctors seem keen that I do something but no-one told me there might be such a reason. Must admit I've been a bit a wary of such activity in case it increases my testosterone and enlivens any prostate cancer cells that could be lurking. Although that may seem a bit like believing in witchdoctors. I'll read up about it, thanks.

User

Posted 28 Oct 2017 at 12:58

Hi Pete,
I read your post with interest , what you said is the way I feel sometimes, I understand "use it or lose it" but if I stimulate myself I fear that it may increase the testosterone and feed those prostate cancer cells hiding somewhere . I've had the robotic surgery & the radiotherapy , what next if it comes back again.

Regards

James

User

Posted 28 Oct 2017 at 14:59

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

User

Posted 28 Oct 2017 at 16:19

Lyn,
Thanks for that, I did read somewhere that Testosterone feeds the PC however you are correct why would the NHS provide you with treatment & drugs for ED if it further increased the risk.
Happy Days

Kind Regards
James

User

Posted 28 Oct 2017 at 18:14

Consultant did say he would arrange for Tony to see the specialist nurse to get a vacuum pump. Seems to me it's a bit premature pre op but then maybe he thinks it best to allow us time to get our heads around it.

I think it may be a bit of a passion killer at first as you feel your sex life is being medicalised. I suppose in time we will get used to a new normal and find our own way of being intimate. At this point I don't see me wanting to go to an ED clinic/ counsellor but this may change in time.

P.S. Just had my first meltdown after visiting the mother in law with Tony. Cut a long story short I ended up storming out and went to sit in the car to cool off. Doesn't help anyone I know. It's very true this thing is like a rollercoaster ride. Just as your trying to be positive someone comes along who's very negative and starts intimating he's practically terminal because he's s having surgery rather than radiotherapy.( Because all the men in her age group are too old for surgery probably)
Tony did try to explain to her the surgery is a good thing and they wouldn't do it if they thought it wasn't contained) but don't think she gets it.

User

Posted 28 Oct 2017 at 20:10

The surgeon told me pre-op I'd need tablets which I've got but only used one to little effect, except some strange aches.

User

Posted 28 Oct 2017 at 20:18

Thanks Pete Did you have nerve sparing? Read your profile and that's really good you had negative margins ( The holy grail for me) Bodes well for you.☺

User

Posted 28 Oct 2017 at 20:35

Hi Peggles,

He said he'd try to save the nerves on one side but another surgeon said it can't be guaranteed as they have to pick them away and it's a delicate operation. So far there isn't much sign he saved any although I'm cautiously optimistic as I get slight reaction. Optimism is good although easily said. Before the op I lost all desire due to stress but post op I've been fine. I did try some final activity before the op though.

Although it was negative margin it was upgraded to 4+4 which isn't good, and he was evasive about how much margin there was as I thought the report would have said. Cautiously optimistic on all fronts since the op though.

User

Posted 28 Oct 2017 at 20:47

I think I must have high levels of testosterone as I started shaving young and lost and gained hair faster than most. Although I don't really know.

I don't want to hi-jack Peggles thread so won't post on this anymore.

Regards Peter

User

Posted 28 Oct 2017 at 20:59

I don't mind about the hi jacking Pete.☺

User

Posted 28 Oct 2017 at 23:47

Here's just one more then James and Lyn,

I take the point that Lyn made but like to look at things that might lead to something.

This is a good link on how to increase testosterone(T) by a non-medical person, assuming this is the opposite of what we want.

http://www.artofmanliness.com/2013/01/18/how-to-increase-testosterone-naturally/

Basically it says to increase T: eat green veg, egg, nuts, red meat, lift heavy weights, have sex. The hormone Vitamin D3 as well, which is something people sometimes say take. Presumably doing the opposite would decrease it.

That is if you suspect reducing T would slow down the growth of any rogue lurking cells. I'm also thinking you need to toughen your immune system to fight them and need some of these. So basically live healthy and try to keep happy.

Regards
Peter

User

Posted 31 Oct 2017 at 11:45

Hi Peggles

As Lyn posted :

""*There is a member here who has regained natural erections after non nerve sparing but this is extremely rare and the urologist thinks that possibly a few nerves were left behind.""

The above may have been gleaned from my profile (I haven't posted a great deal on ED specifics).

Hopefully you have a date booked now and made decision, you seem 'similar' profile to me. We took decison from MDT.

We were realistic and well informed : Expect the worse, and we hoped for the best as we say: plenty of options if ED. A friend of a friend had an penile implant on NHS ! (not for me though)

However nearly 3 years post op, progressing very well last few months. Briefly, Kegel must help and use it or loss it . Try not to give up and try various solutions. ie PDE5 inhibitors (tried various for few months, first 12 months, no use if no nerve signals - gave up - headaches also ). Alprostadil (Vitaros cream) - thanks to Chris (very informed member) who told me about this. Used to minimal effect and gave up on that. However erection lasting longer and stronger, so we kept positive.

Yes, agree it's all a palaver and cross the bridge as you need to. Nerves and blood vessels will be severely traumatised and need 2 to 3 months to fully recover. We were more concerned re. urethral anastomosis / stricture and continence, so anything else was a real bonus.

As an aside - urine flow has been better than before, control great. I was probably very lucky (see profile for more detail). Very occasionally climacturia, although this subsiding.

All the best

Gordon

Edited by member 31 Oct 2017 at 11:47 | Reason: Not specified

User

Posted 31 Oct 2017 at 21:10

Thanks Gordon No we haven't got a date yet but hopefully sooner rather than later. You do worry about what the cancer's doing in the meantime especially the Gleason 4 element.

Of course everybody wants a cure, full continence and erectile function. If only it was that easy. One day the treatment(s) may make this a possibility for all and no surgery involved. However presently in the here and now we can only make an informed choice and hope that we are lucky.

Tony hasn't quite decided yet re the nerve sparing but is leaning towards them going
as we both think the surgeon being able to take a wider margin may give a better chance. He really dreads the idea of having to go down the Radiotherapy/ hormone route afterwards although there is never any guarantees that could happen nerves spared or not.

It would be great if he can eventually pee properly again as he's suffered from an enlarged prostate for many years.

Regards
Ann

User

Posted 31 Oct 2017 at 22:36

John had problems peeing and was on medication from the age of 35. In his own words, post ok he could per over a barn door. It was one of the few benefits of getting cancer!

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

User

Posted 01 Nov 2017 at 18:25

Thanks Lyn. Hope that's the case with Tony. Would certainly save the constant searching for toilets when we are out and about.☺

User

Posted 12 Mar 2020 at 05:37

Reported to moderator !

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