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Surgeon Says My Nerves Will Be Spared. Good News I Hope!
I've posted before, so some of you may already know the story, but I'm 54 and have had kidney cancer 9 years ago and now an advanced prostate cancer. One was fairly unusual but not unheard of (my kidney cancer was one of the rarest cancers in the world), but two and particularly advanced prostate cancer that came on very rapidly is a bit confounding - again at my age.
Thanks in part to the input from here (thank God for finding it and finding your helpful people), I have been able to start making intelligent inquiries into my treatment.
Anyway, I asked my doctor if he could spare the nerve endings and he said he absolutely was certain he could. Apparently he has more surgeries of this type than most other urologists in the country and said that due to my scores he believed if we got it out soon he could spare them.
My understanding is that this may help prevent ED or at least long term ED. Is that correct? Does it also improve the incontinence too?
He's also decided that, based on two cancers at my age, he's is going to to do germline testing which also opens me for clinical trials apparently. Anecdotally it seems like a good thing? Anyone know?
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That's awesome news. Yes, saving the nerves (there are 2 bundles attached to the prostate - one either side) will help with erectile function & hopefully incontinence as well.
The idea is that they won't remove the nerves unless one or both bundles are close to the cancer cells.
They do peel the nerves away from the prostate, to get it out. So they will be bruised for a bit, if they're kept intact.
I'm seeing my surgeon next week, to see if the nerves were spared during my surgery a month ago.
Good luck. This is sounding pretty positive for you.
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2 ReactionsObviously everyone is different, but most guys have ED for at least a while after surgery.
Being unable to spare one or both of the nerve bundles does decrease the likelihood of regaining erectile function - but it also depends on how the erectile function was before surgery.
And you'll always have dry orgasms, because they remove the seminal vesicles.
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1 ReactionFortunately I've never suffered even the slightest form of ED, so my hopes are high - or at least far higher. I know dry orgasms are my future, it's something I'll have to learn to deal with.
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1 ReactionYeah, I think that's great news. That was the first question I asked my surgeon; was I a candidate for nerve sparing surgery. Lucky for me I was. Of course, if he gets in there and see's cancer then he'll have to do whatever's required. But based on his experience and the certainty of his answer, I'd be feeling pretty good if I were you. Said another way, I think that's the most positive answer you could have received at this point in time. Of course I'm no medical professional, but that's what I think.
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3 ReactionsAs someone else already recommended to you another thread, don't forget to ask your surgeon/care team about penile rehab. Assuming it's recommended by your care team, it's something you'll want to start sometime after the catheter comes out but probably before too long goes by.
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2 ReactionsGetting genetic (germline) testing should actually be done on everybody with prostate cancer. Does anyone in your family have cancer? Breast cancer and pancreatic cancer in relatives can be due to genetic issues. It’s especially important to check at your age, because having a genetic problem can cause early prostate cancer.
As others have said nerve sparing can save your ability to avoid ED. It doesn’t always work, but it usually does. It sometimes takes a while to get your erection back after surgery, but it may come back right away. Just like everything else in prostate cancer, Everyone is different.
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2 Reactionsok, I'm uncertain about the treatment plan as you said this - "particularly advanced prostate cancer that came on very rapidly is a bit confounding ..."
That would infer systemic, not localized PCa determined through imaging - MRI and CT, PSMA PET....
That's not to say surgery is not part of a De Novo diagnosis of PCa, akin to taking out the mothership...
I digress...when I chose surgery in 2014, I had a pre-surgery consult with my surgeon, like yours, very experienced. We talked about nerve sparing but we also talked about if he identified PCa such that he felt it was necessary to take the nerves out, do so as my objective was a cure.
He did not, Over the next 12-18 months I regained erectile function. He put me on 5mg daily Cialis, that was the extent of his PRT (Penile Rehab Therapy). The rest I was left to figure out (not unusual). Recovery is in part a function of whether or not the surgery is nerve sparing, time from surgery for the nerves to heal, and PRT. Two differences for me were the loss of ejaculation and that achieving an erection was no longer just a function of visual stimulation but physical too.
While it can be complex, PRT for me was simple, time, Cialis and use it (masturbation).
The UCSF has an excellent guide on PRT - https://urology.ucsf.edu/patient-care/adult-non-cancer/male-sexual-and-reproductive-health/erectile-dysfunction.
I don't think the incontinence is a function of nerve sparing, not a medical person so my general understanding is it may have to do with the Ureta and the surgeon's skills there but others may comment on that.
Kevin
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1 ReactionThat’s great news if the nerves can be spared! My surgery had to cut wide, non-sparing, on one side. It affected me— no erectile function now for almost three years.
I had 1 side of my nerves taken due to PCA involvement. I came on here and got advice about a penis pump. It really works, but you have to take it slow.
The nerves only impact the erection, not the orgasm. Sparing the nerves does not impact incontinence. Do your kegels!!!