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

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unhappycramper
Regular Member


Date Joined Nov 2005
Total Posts : 113
   Posted 6/7/2009 12:56 PM (GMT -7)   
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)


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4044
   Posted 6/7/2009 5:23 PM (GMT -7)   
Unhappy: Im 8 months out from my surgery.. I went through the same thoughts at 6 months. "Did I do the right thing. I don;t feel like a MAN. I want my Hard back! " I think many of us have had those thoughts. With a little time to process I can say that I am happy that I went with surgery. As for as Nervs growing back ( I sure do hope so" I do use the Pump. I take 100 MG Viagra every other day. Still limpy. The pump does work but takes a bit of practce to master the techniques and I think the meat is responding better to the pump as well. I am starting to get some movement down there if you know what i mean but not quite enough.

If you want to talk my e-mail is active and I will call if you need. Hang in there guy. It will get better. I suspect never like before but good anyway. Hope this helps.

Jeff
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 ED- 5 mg Cialis daily, pump daily,


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 6/7/2009 5:37 PM (GMT -7)   
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 :-)
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
ED:
After a learning curve, Bimix injections (0.2ml) are working well. VED also works but we find it inferior to Bimix.


rob2
Veteran Member


Date Joined Apr 2008
Total Posts : 1131
   Posted 6/7/2009 6:32 PM (GMT -7)   
I have been on .25mg of viagra a day for over a year now. Things started looking up at the 9 month mark. I am still not back to normal but I believe I will be. I also have the pump and it seems to work. Don't give up. Seems like you have a good sense of humor so hang in there!
 
Age 49
occupation accountant
PSA increased from 2.6 to 3.5 in one year
biopsy march 2008 - cancer present gleason 7
Robotic Surgery May 9, 2008 - houston, tx
Pathology report -gleason 8, clear margins
12 month  PSA <.04 (low as the machine will go)
continent at 10 weeks (no pads!)
ED is still an issue but getting better


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 6/7/2009 7:02 PM (GMT -7)   

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

 

 

 


Age 60
PSA 2007 4.1
PSA 2008 10.0
Diagnosed April 2008
Biopsy: 6 of 12 cores positive
Gleason 4 + 5 = 9
CT and Bone Scan negative
Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared
Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th
pT2c
lymph nodes negative
PSA Sept 28, 2008 0.00
PSA Jan 22, 2009 0.00


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 6/8/2009 2:53 AM (GMT -7)   
You asked,  "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?".
 
My husband's return to 95% pre-surgery function with nerve sparing took 2 years. The first 6-12 months were the hardest so tried to focus on the nerve healing explanation. Doctor was reassuring in early months. Husband could not use pump but Levitra 20mg came good at 10 months and improvement steady since then to now no meds needed at 2 yrs, 1 month. He did not choose injections for reasons of his own.  Hope this answers your question. Sorry my husband is unable to answer it himself, but he cannot use a computer. Good luck with your recovery. I think the info on nerve healing and the slow rate etc posted by others is true - at least from our experience.


Creed_three
Husband 51 yrs (49 years at diagnosis)
PSA (2002) 2.1.  PSA (2006) 3.5.  1 x (5%) core of 12 positive at biopsy. 11 cores negative. Open Radical Prostatectomy with nerve sparing April 2007. Gleeson 3 + 4 = 7.   Undetectable PSA since Surgery (< 0.1) specifically,  
June 2007: 0.01; Oct 2007: 0.02; April 2008: 0.02: Oct 2008: 0.03:
Nov, 2008: 0.02; April 2009: 0.03 
 


dsmc
Regular Member


Date Joined Jul 2008
Total Posts : 149
   Posted 6/8/2009 5:42 AM (GMT -7)   
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
Age 53
Pre-op PSA 4.3
Surgery Feb. 17 2005
Post-op Path : Gleason 3+3=6
Right pelvic lymph nodes: negative for metastatic carcinoma
Left pelvic lymph nodes: negative for metastatic carcinoma
extent: right lobe 40% left lobe 10%
capsular penetration: Absent
Seminal vesicles and vasa differentia: Uninvolved
Prostate: 26 grams
Post-op PSA's <0.04 for 3 years
Feb. 08: 0.07, March 08: 0.08, June 08: 0.09 and Sept. 08: 0.1
IGRT scheduled.....November 17th....
FINISHED 01/14/09 YEA!
05/14/09
1st PSA after Salvage RT <0.04..... Another YEA!


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 369
   Posted 6/8/2009 3:14 PM (GMT -7)   
Yes, I too would like know if I'll ever get back to normal either. I am 9 months out post robotic surgery and only semierections are occuring with all the stimulation in the world. Viagra, Levitra just cause the lights to have a weird blue color, plus a stuffy nose. I haven't tried Cialis yet because of all the reports of backpain with this drug. I am getting by with trimix, but I was really hoping for a lot more from my surgery than this. After all it was a nerve-sparing surgery. I feel your pain or sense of disappointment on your outcome...................
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive for Prostate Cancer on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 3+3=6 both cores,
Clinical Stage T1C
 
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery,
No signs of spread, organ contained,
3 0's in a row now, 7 months out
Incontinence gone in early December '08,
ED remains, uro said try oral meds and then trimix for sex only now


Bob D
Regular Member


Date Joined Mar 2008
Total Posts : 199
   Posted 6/8/2009 7:31 PM (GMT -7)   
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.
 
    1. Age 59, psa 4.7 in Jan. 08. Biopsy: one positive sample out of 13. 1% of one sample cancer. Prostate removed on 3/5/08. Open Surgery. Northeast Georgia Medical Center, Gainesville Ga. Nerves spared. Cath out 12 days later. Continence good. No pads needed since 6/10/08. First PSA: Less than 0.1 on 6/17/08. First erection five days post op and have been improving well since then. Full erection now possible (less than four months post op) with the assistance of Cialis.  Post Op Biopsy : No malignant cells in lymph node. Gleason 3=4=7. Tumor on both lobes. Urethral margins/apex free of neoplasia. Right and left seminal vesicles free of neoplasia. No invasion of prostatic capsule of the resection margins are noted by the tumor. Tumor occupies 10 to15% of the prostate gland. Path staging T2c, NO, MX- Group staging II.  Focal areas of perineural invasion by tumor are noted. 80% natural erections and full erections with 10mg Cialis. 9/22/08-Took 10mg Cialis on Monday night, had very usable full hard erection at night, the next morning, and the following Thursday morning, 60 hours after original dose !! Orgasm quality Excellent.!!!!! I am pleased with the progress so far. Married to same wonderful woman for 39 years. She is still beautiful and sexy as ever. A great help in my recovery !!: 3/12/09: Full natural erections with penetration. 10mg Cialis makes them easier to maintain but I have had several med free full erections lately, Yipieeee !!!!!!!  3/24/09: One year PSA <0.1.  3/28 & 3/29: had sex with full naturals with no meds. Erections are gained and maintained with very little manipulation. Getting more like pre op every day. 5/30/09, I take only 5mg Cialis every 2 or 3 days. This greatly assists my full naturals and provides great staying power and no manipulation required and allows sex anytime !! Lenght and girth are back to pre op size due to regular "workouts".
    1.  


      unhappycramper
      Regular Member


      Date Joined Nov 2005
      Total Posts : 113
         Posted 7/13/2009 9:10 AM (GMT -7)   
      Hi guys (and the gals who write on behalf of their guys)

      Thanks for all of your informationa and shared stories.

      DSMC your report stated,
      " Right pelvic lymph nodes: negative for metastatic carcinoma
      Left pelvic lymph nodes: negative for metastatic carcinoma"

      I have a rare (NET) Neuroendocrine Carcinoid carcinoma history of past surgeries besides my low-grade prostate cancer for which I had the January Radical Prostatectomy, and wanted to know if they were looking for the carcinoma in addition to any prostate cells with you. or maybe it's routine.

      mikey1955
      Veteran Member


      Date Joined Dec 2008
      Total Posts : 672
         Posted 7/13/2009 1:02 PM (GMT -7)   

      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

       


      Lower left groin hernia: mesh and large scar: surgery early 2006
      Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months (Nov 07-Jun 08) for diagnosed prostatitis.
      PSA start of 2008: 5.3..... PSA June of 2008: 7.3
      14 DRE all benign or nothing felt
      TRUS Biopsy Nov 08: Got copy of pathology (see below). Prostate about 40 cm sq.
      General Health: pretty good, 5' 10", 180 lbs, slim.
      Bone scan Dec 08: Negative
      Barium enema X-ray (March 09 due to several days of blood in stool)
      MRI with endorectal coil (April 09 as part of a study)
      3D advanced TRUS (April 09 as part of a study)
      CT (April 09 as part of a study)
      Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes. 30%-65%. One core perineural invasion. 2 cores "foamy" and suspicious. All +ve cores, 3+3 GS 6.
      Open RP surgery: May 5/09 Surgeon spoke to my wife and was very positive. Said both nerve bundles spared and not damaged. Bilateral lymph node dissection performed. Discharged 48 hours after surgery. Staples out, catheter out and pathology sheduled for May 21.
      Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
      Physical State: Getting back to working out slowly. Urinary control pretty much from the time of catheter removal. Rectal pain, sometimes bad but, told is normal. Erectile function at best 25-30% of presurgery. Trying Levitra...first 10 mG dose gave me nasal congestion, 50% chubby and a 24 hour headache...may go away with more use or change of meds. Considering pump. Recovery from surgery going very well.
      Mental State: Pre-surgery anxiety gone. Positive attitude. Some anxiety about seeing radiation oncologist and upcoming 3 month PSA. 


      goodlife
      Veteran Member


      Date Joined May 2009
      Total Posts : 2691
         Posted 7/13/2009 2:28 PM (GMT -7)   
      Is it possible that sometimes we all spend too much time with I shoulda, woulda, coulda's ? It is what it is !

      Nothing will ever be as good as 20 year old sex. Even without a prostatectomy, it won't be as good. It is just a fact of life.

      There is a solution for almost every problem we go through. Will it be as good as it used to be ? No . Let's just move on, take what we can get, say it's better than living with the threat of bone cancer, brain cancer, etc, or at least less of a threat than if we had a cancerous prostate !

      We need to spend our time in positive thinking about how to improve our future and the future of those on this forum. Let's play the cards we were dealt, and quit looking for aces up our sleaves.
      Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
      Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
      0/23 lymph nodes involved  pT3a NO MX
      Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
      Neg Margins, bladder neck negative
      Living the Good Life, cancer free  6 week PSA  <.03


      mikey1955
      Veteran Member


      Date Joined Dec 2008
      Total Posts : 672
         Posted 7/13/2009 4:01 PM (GMT -7)   

      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


      Lower left groin hernia: mesh and large scar: surgery early 2006
      Nov/Dec 07 and March 08 and now Dec 08: Severe perineal pain (between scrotum and rectum). Septra/Bactrim for 8 months (Nov 07-Jun 08) for diagnosed prostatitis.
      PSA start of 2008: 5.3..... PSA June of 2008: 7.3
      14 DRE all benign or nothing felt
      TRUS Biopsy Nov 08: Got copy of pathology (see below). Prostate about 40 cm sq.
      General Health: pretty good, 5' 10", 180 lbs, slim.
      Bone scan Dec 08: Negative
      Barium enema X-ray (March 09 due to several days of blood in stool)
      MRI with endorectal coil (April 09 as part of a study)
      3D advanced TRUS (April 09 as part of a study)
      CT (April 09 as part of a study)
      Biopsy Pathology: 5 of 8 cores positive, adenocarinoma in both lobes. 30%-65%. One core perineural invasion. 2 cores "foamy" and suspicious. All +ve cores, 3+3 GS 6.
      Open RP surgery: May 5/09 Surgeon spoke to my wife and was very positive. Said both nerve bundles spared and not damaged. Bilateral lymph node dissection performed. Discharged 48 hours after surgery. Staples out, catheter out and pathology sheduled for May 21.
      Post Surgery Pathology: pT3a N0 MX, extraprostatic extension (EPE), stage III prostate cancer, lymph nodes clear, seminal vesicles clear, Gleason upraded to 3+4 GS 7. EPE within surgical margins. Other than prostate and EPE, all tissue removed negative for cancer involvement.
      Physical State: Getting back to working out slowly. Urinary control pretty much from the time of catheter removal. Rectal pain, sometimes bad but, told is normal. Erectile function at best 25-30% of presurgery. Trying Levitra...first 10 mG dose gave me nasal congestion, 50% chubby and a 24 hour headache...may go away with more use or change of meds. Considering pump. Recovery from surgery going very well.
      Mental State: Pre-surgery anxiety gone. Positive attitude. Some anxiety about seeing radiation oncologist and upcoming 3 month PSA. 


      goodlife
      Veteran Member


      Date Joined May 2009
      Total Posts : 2691
         Posted 7/13/2009 4:21 PM (GMT -7)   
      You may have noticed I said us and we. I am talking to myself as well. I know much about ups and downs. Part of the way I can work my way out of it is to talk tough to myself. What good is it doing me to sit around wishing ? Not much I reply and get off my butt and get moving again.
      Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
      Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
      0/23 lymph nodes involved  pT3a NO MX
      Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
      Neg Margins, bladder neck negative
      Living the Good Life, cancer free  6 week PSA  <.03


      RBinCountry
      Regular Member


      Date Joined Apr 2008
      Total Posts : 270
         Posted 7/13/2009 5:10 PM (GMT -7)   
      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.

      RB
      Age 62
      Original data - pre-operation PSA: 5.2, T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 3+4 in 1 core (40%), 7 cores Gleason 3+3 ranging from 5% to 12%, All scans negative.
      Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind). Robotic DiVinci surgery, Dr. Fagin (Austin) 5/19/2008, Post operative pathology - pT2c NX MX
      Gleason 3+4, Margins - negative, Extraprostatic extension - negative,
      seminal vesicle invasion - uninvolved.   PSA's 7/12/2008, 10/30/2008, 4/03/2009, 7/6/2009 - all undetectable 

       

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