Almost SIX months out of Radical/Prostatectomy (01-12-2009)Nerve-Sparing

Hi to All!
I underwent a nerve-sparing (so the doctor told me..haha) Radical Prostatectomy, at one of my post surgical visits with my Oncologist, he said there is a chance the cancer could come back! WHAT? I could not believe this. He said never say never, but if this goes to the bones, then it's radiation time. I thought I was completely out of the woods. Truthfully, as slow as this cancer seems, I'm not sure I should have had the surgery. But at 54 years, I honestly don't know if I did the right thing or not.

What I do know, is despite the possibility of getting more aggressive prostate cancer if I did not undergo the surgery, I would have a more fulfilling (girlfriend nods yeah!) sex life longer,but now with dry orgasms,and limpness ALL the time, it's taking a psychological drain my disposition.

Some say I could have lived normal life even with the low-grade cancer,but at least I could have continues with my erections,but even after four months,I'm still taking .25 mgs of viagra, ordered a pump,and still very frustrated. Guys on here tell me never give up, it will come back with nerve-sparing surgery,every guy is different and may have success before the next guy. IS THIS TRUE? Viagra is used in the healing process,but don't know how it actually stimulates the nerves. I got nothing...only weird,dry orgasms with no stiffness.

For a rare Carcinoid Cancer I'm also lucky to have, (NOT!!!) I have labs done to check elevated tumor marker activity. Blood, it's Chromogranin-A, Substance-P, and in the Urine, it's the 5Haii 24HR. if they are up, then it's a radioactive, nuclear CT over two days, to see if the tumors "light up". If so, it's back into surgery.

But as far as prostate, all I know is the PSA and the Digital,then comes the prostate biopsy,followed by either seeding,watchful wait, or the dramatic non- sparing or nerve sparing surgery. It was the daVinci Robot for me.

On this site, you will find out a lot of information...such as, my doctor never told me that nerves regenerate at the rate of 1/2 inch per month, which I just read on this post. is this True or not? It's some sign of hope.

I'm curious though, has anyone undergone the nerve sparing surgery, taken the prescribed .25 mgs Viagra,cialis, or levitrol more than a year ago, used the pumps,(no injections) and have the nerves grow back and actually have a successful sex life?

** Another post Surgical issue I have is that since they found a leaky suture when they tied back the urethra to my bladder, they kept me in the hospital for additional nine days then sent me home with the same catheter for an extra seven (7) weeks!!! Now everytime I urinate, it's very uncomfortable. The Doc tells me it's probably scar tissue from the catheter. Oh-Boy!
Thanks to all! hang in there, and you all are in my prayers. :)

Post Edited (unhappycramper) : 6/7/2009 2:47:18 PM (GMT-6)

I have read that nerves do grow back at about 1/8 inch per month -- but perhaps it is 1/2 inch in supreme optimists!. 1/8" is consistent with the often stated view that it takes about 2 years for erectile function to be properly recovered. (OK, sure some sooner, and some never.)

My understanding of Viagra and the like is that they require some nerve function to work. They operate on the blood supply, expanding blood vessels. But the nerves remain as the master switch and if signals from rest of the nervous system are not reaching them, you get no results.

By contrast, injections work on the same switch as do the (missing) nerves, so if we have a good blood supply, bingo, erections regardless of the state of our nerves.

Even with "got it all" surgery, there are no guarantees. PCa can come back up to 10 or more years later -- but it becomes less likely with the passage of time. And even it it does, it is still very treatable. You have had the surgery, and gave yourself the best chance of curing the cancer. Don't look back -- you can't change the past.

If ED is your present problem, get working on that. Try the pump when you get it -- and it will need some practice to get used to it. If you're not happy with that, try the injections -- they should work in every case where your plumbing is otherwise sound. Onwards and upwards

Hi

I also had nerve sparing but the open Surgery. Four months is too soon to expect anything, the guys that regained use soon after the surgery are 1 in 1,000's. I started the pump at 3 months, which after a lot of trial and error, worked to a certain extent.

The big difference was with Caverject or Edex injections. I was back to normal in 5 minutes.  However, I couldn't take the alprostadil pain so switched to Trimix. Same result in 5 minutes. Maybe your girlfriend will do the injection if you don't like seeing the needle.

Latest results at a year after surgery, is that I'm back to Noctural Erections every night. Viagra and Levitra are also working at 75%. I expect in another year to being totally back to normal. Not sure if I will give up the Trimix. I really like that staying hard after orgasm. It's not over until I want it to be.

Good Luck

My experience was 2 years dead on. Good to go now. Patience would be the word of the day. As my signature tells I had a recurrence @ 3 yrs. but all is well as of now. Heal well and good luck.

David

I won't repeat myself as most of what I have to say is in my profile below. However my erections have continued to improve. Do try Cialis as it does not have any side effects with me. The most I have taken in one dose is 10mg. I split a 20mg pill in quarters of 5mg. I feel like I am cheating them getting several erections from one pill. But it is the cheating I can feel good about .  But do get blood into it as often as possible.  

Hi Unhappy,

I'm about 10 weeks out from open prostatectomy. Since I had a fairly high core content in my biospy, the surgeon advised open instead of robotic. He said there was importance with "feeling" the prostate and having a better overall look and see with open. After the surgery, he told my wife both nerve bundles were spared. During the 2 weeks I had the catheter in I got a few minis. I thought this is great! I still do get them and often when I least expect them. But, of course, by the time I get home...nothing. I've tried Levitra several times. It helps and I'm continuing with that....only 50% at best and a headache.  I ordered a VED and I'm waiting for delivery.

Also, when I do get these mini erections, I notice some pain and discomfort along both sides of my penis...the areas that I assume used to fill with blood to get an erection. Maybe this is all good. I don't know. I will be seeing my surgeon for 3 month PSA and will discuss this with him in a couple weeks.

On the IC side, I've been very lucky. Within 2 days of catheter removal, I was in full control. Except for the sudden urgency, which is subsiding very well, I am pretty much back to normal...or at least pre-surgery. I had some adhesive trauma with the improperly installed man-pads which I only used for a week...more for insecurity than anything else. I'm lifting heavy stuff at home, doing heavy shovel work on a new deck and no leaks...yay...ever.

Yet, I am in a huge depression right now. Maybe this is just a post-surgery blip that I've heard from other members. I know I'm only about 3 months post-surgery, but the ED thing and an unexpected drop in energy and attitude bothers me. I believe I made the right decision on surgery. I hope that cancer is gone for good. Any orgasms I've had are as distant and minimal as the erection that goes with it. That, I hope, will improve for all of us.

Mike

Thanks for a good post goodlife.

However, there are guys like me and probably many others, that do go through cycles of being down. I am there right now. I have a lot, a VERY lot to be grateful for. However, I have hit a deep slump and need to at least vent a bit. Your comments are correct, we should be looking at only the positive.

Sometimes it's hard to do.

Mike

I want to thank a couple of you guys who are encouraging on ED. My uro told me that what you are at 1 year is what you will be - I think you two guys that have improved or returned to a normal or near normal status after 2 years are the first I have heard - you have given me fresh hope.