Post Prostate Cancer Surgery ED and Slow Progress

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Davisal
New Member


Date Joined Dec 2008
Total Posts : 15
   Posted 12/18/2008 5:07 PM (GMT -6)   
I am 59, fit and trim, good health, very active, etc. but was diagnosed with prostate cancer.  It was said the cancer was small and caught early therefore suggested that I have radical prostate surgery (removal of prostate) to rid my body of the cancer.  We decided the Davinci robotic type surgery held the best potential for best/quick healing, full recovery, and resumption of normal erections.
 
My surgery was on Aug 8th, 2008 and I immediately had trouble afterwards.  I was so weak and uncomfortable, I could not get up for several days after the surgery.  Stayed in the hospital for 7 days, went home, developed a pulmonary embolism (PE), was rushed back to the hospital where I remained for another week.  Finally was released and went home to begin my recovery.
 
It has now been 4 months since the surgery.  I am still wearing liner/pads for some occasional daily leakage and have not had an erection despite the nerve sparing surgery and the use of the "blue pills" and lots of stimulation by a very compassionate wife.  I can achieve an intense orgasm, but no erection.  My surgeon has suggested the use of the pump for rehabilitation therapy.  I met with a medical equipment rep who explained the pump and its use.  I ordered the Osbon Erecaid pump kit today and will begin that regimine soon.
 
I have an almost continual tenderness and/or pain in the area of the surgery and cannot sit straight without discomfort.  Some days the pain is worse than other days, but almost continual.  After having an orgasm, the pain is much more intense for several days.  My surgeon says I just am taking more time to heal than was expected.
 
Needless to say this all is quite disappointing and NOT how my post surgery recovery was expected and described to be.
 
Hopefully the pain will eventually subside and the pump will help so I will eventually regain the ability to have normal erections and sexual relations.
 
Good luck to all others who are going thru this.
 
Davisal 
 
 
 
 
 
 
 
 

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 12/18/2008 9:54 PM (GMT -6)   
Davisal, welcome and I'm sorry you have had such a rough post-surgical experience.  I hope things will turn a corner and you will quickly improve in all areas.  You came to the right place for info, sympathy, and sharing, so hang around and share your Journey with us as it progresses.

James C.         Age 61
Co-Moderator- Prostate Cancer Forum
4/19/07 PSA 7.6, referred to Urologist, recheck 6.7
7/11/07 Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07 Path report: 3 of 16 PCa, 5% involved, left lobe , GS 3/3:6.
9/24/07 (open) Retropubic Radical Prostatectomy performed
9/26/07 Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
16 mts: ED- Viagra, pump continues, no response- Trimix ..35ml x 2 weekly continues
Post Surgery PSA's: 3 mts-.04, 6 mts.-.04, 9 mts.-.04, 1 Year-.02.


Bob D
Regular Member


Date Joined Mar 2008
Total Posts : 199
   Posted 12/18/2008 11:39 PM (GMT -6)   

Davisal,

Sorry you are having a time of it. I had open surgery in March and it went great. This surgery affects men differently. It is still early in the game for you. Hopefully all will go better for you.

 

 


    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 !!:


kreplerfp
Regular Member


Date Joined Oct 2008
Total Posts : 56
   Posted 12/20/2008 5:25 PM (GMT -6)   

Davisal

I understand completely were your coming from. I am 56 and my RP surgery was Sept 18 08. My recovery also has not been what I would have liked. I had the same pain and could also not sit up straight either without my donut. My pain was also constant, worse with bowel movements.

 I also can have orgasm, but no erections even with 20 mg cialis. I don`t know any guys who can have an erection at 4 months, without injections or a pump. I see my pain getting better with time, and as of now I am able to sit and stand better with less pain. You have to be patient, just like everyone says. I know, its been hard for me also, to be patient, cause its very frustrating to be turned on, and not be able to get it up for intercourse. I guess that`s life for now. I just keep thinking how good its going to be when it finally happens. Good luck, It will get better for all of us

 

Fred

 


Diagnosed Feb 08
 
PSA 6.3
gleason 3+3
T2C
first biopsy 1 of 10 needles positive
surgery Sept 18 08
bone scan negative
evidence of sinus histiocytosis?
involvement of the margins identified at right and left apex and right anterior surface
also perineural invasion
no extraprostatic extention
no seminal vesicle invasion
tumor cells aggressive features of moderate to severe pleomorphism
possible radiation depending on first  PSA  Nov 12
kept left side bundle of nerves but lost some of the right side bundle


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/20/2008 6:07 PM (GMT -6)   
Davisal,

Sorry you are having a rough time. I take stool softeners everyday just to make sure when I have a BM that there's not too much strain or pain, that seems to work well. The only other time I have pain up there is if I sit in a hard chair/seat for any length of time. Had my open RP on 11/14/8 and I am 56. We all heal different, that's for sure, and each seem to bear our own cross of burden with our PC. Hope yours improves well.

David in SC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerving sparing, 4 days in hospital, staples removed 11/24/8,
Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08 - uncertain of what went wrong.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin
 
First PSA Post Surgery  Scheduled for 1/5/9
 
 


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 12/21/2008 9:25 PM (GMT -6)   

Davisal

I had the RP surgery on May 21, 2008 and still don't have natural erections although I had only one side of my nerves spared. But on the constipation issue, I take a Ducolaux daily or the generic equivalent. Had a quintriple by-pass in 2005, (I'm 59 now) and constipation showed up immediately. It never completely went away and then returned stronger than ever after the RP surgery. Target has the best generic equivalent for that issue.

After trying Viagra and Cialis, which didn't seem to do any good. I also tried a VED from one of the sex stores. It worked ok but only with double rings. So I have moved on to Injections with Caverject or Edex. They work great but with some after effect pain. I plan on trying the Bimix or Trimix next. Have had 3+ hour erections with Caverject or Edex. I was also hard in 5 minutes. I have noticed since doing the injections that the Viagra is starting to work but not as well as the Edex. The reality seems to be for a guy in his late 50's, the ED recovery is 12 to 18 months.

D

   

 

 


califguy
Regular Member


Date Joined Sep 2008
Total Posts : 72
   Posted 12/21/2008 10:04 PM (GMT -6)   
I can sympathize with the pain issues. My doc said I could leave the hospital the next afternoon. I stayed until the next morning due to distance. But I still wonder if I should have stayed longer. After I was home, I hurt so very badly in the perineal area. Sitting made it worse. A bowel movement made it worse. Simply maybe gas made it worse.
 
My doc didn't have much to say. I too didn't bounce back near as quickly as he thought. Instead of 6 weeks to 2 months off work, I was off three months.
 
Then I had the set back and was back in the hospital. Last week he finally felt I was doing well and I do think I am getting much better now.
 
Sure wasn't what I had expected either.
 
I fortunately do not have ED problems. Maybe won't respond as quickly as it used to, but are equal to before surgery especially if I use Viagra.
 
Take some and try not to worry about it. Worrying does not help at all.
 
Bill
Don't get discouraged!!
CalifGuy
 
Diagnosed Feb 2008  54 years old
3+4=7 gleason
7.5 PSA
4 out of 20 biopsies were cancerous
daVinci Robotic surgery July 24, 2008
Univ of Calif San Francisco Med Center  Dr Peter Carroll
In hospital 2 nights altho I had option of leaving the next day but stayed due to distance home.
Contained in prostate, not spread
Six weeks post surgery PSA less than .01
Five month PSA less than 0.1  Lab did wrong type of PSA test so this test was not as accurate.


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 12/22/2008 11:28 AM (GMT -6)   
I'm just over 3-months post-op.  For much of this  period I was using 8-10 pads per day.  Several weeks ago the leakage slowed.  During the past week, I'm at about 3 pads per day.  My surgeon advised me I wouldn't see noticible improvement until the 3 to 6 month period, and that seems to be what's happening.  Regarding ED:  I'm on a Cialis/MUSE combination and I've yet to achieve an erection, but, like others I can experience an orgasm.  I was one of the lucky ones, in that I've experienced very little pain and I returned to work 3-weeks post-op and my daily routine is close to what it was pre-op.  Best wishes for a speedier/comfortable recovery.


Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (getting better, though)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0

 


iwant
New Member


Date Joined Dec 2008
Total Posts : 1
   Posted 12/22/2008 9:55 PM (GMT -6)   
I posted this before, but I removed it and am now re posting it.

Other than the pain, I too have the same problems as you do. I have read lots
of these messages and see many men getting prostatectomies when they are in the very early stage. I am wondering what would happen if more men chose watchful waiting? That was my first choice, but my wife and the surgeon were certain I would die a painful death. I am honestly not sure if I would rather not have waited until the cancer was further along. It seems that I had a very slow growing cancer and I might have outlived it or died of something else in the mean time. I would rather of had a few more years as a whole man than live a longer amount of time and be in the condition I am in.

Diagnosed August 2007. I had da Vinci robotic prostatectomy
12.19.2008. I just found this forum. I have a lot of questions about
problems I am having and that others also have. My doctors brush off my
concerns saying "it takes time". I will post my complete history some
other time. I am not looking for sympathy. We all have our problems. I
would like to find some help to get over mine. I expressed my concerns
about ED and incontinence prior to surgery and I was sold a bill of goods.
After 1 year with these problems I am starting to get angry because I am
being brushed off by the doctors. It really does not matter what the
percentage of men have ED incontinence or after surgery, I was told 80%
have no problem, 20% get over the problems after 1 year. After surgery I
was told 2% may never recover from ED and incontinence. So I am in the 2%.
I was warned but it was played down.


Briefly:
1 year after da Vinci robotic prostatectomy still 85% stress incontinent. I
wear Depends 24/7 and use 3-5 per day. If I lay down or sit I am OK, but if
I stand up, bend over, pick something up, sneeze, cough, be alive, then I
dump whatever is in my bladder into the diaper.


Very active sex life before surgery.
100% ED after surgery.
2.1.2008 Tried cialis, no effect.
5.13.2008. Tri Mix hurt like I slammed between a door and the door jam. 4
hour erection, almost had to go to ER.


Called doctor and he was surprised I had so much pain.
7.16.2008 Cut the PGE from the tri mix to make bi mix,
Less pain, poor erection.
Noticed that I now have Peyronies.

I am trying to take this as well as I can. I try to joke about it but after
a year things
are not getting better and reality is setting in.

I did a google to see if there was a relationship between tri-mix and
peyronies. Seems like I am not the only one. More later.

Thanks for reading my post. I will be happy to receive replies.

alex1
Regular Member


Date Joined May 2008
Total Posts : 29
   Posted 12/23/2008 11:03 AM (GMT -6)   
Davisal:

The one thing to remember is that everyone's physiology (and hence, experience) is different. You have my sympathy for your issues, but chances are that the passage of time (and little appropriate exercise) will make them better. In my case, I had a fairly textbook experience with the DaVinci surgery as far as direct problems. However, the ED in my case has required more patience. I'm now nine months post op, and only now beginning to get some life back. I religiously used the pump and Levitrix, for a long time (it seemed) with little result. Only recently has the "little soldier" begun to stand at attention again on his own. In the meantime, the alprostadil drugs (injections or MUSE) seem to work well to remind us a little bit about what sex was like pre-PC. In spite of difficulties, I take a great deal of solace in knowing that the PC is no longer in my body, so I do sleep better at night.
58-year old attorney, no family history of PCa
Biopsy 12/29/2007 with 1 of thirteen samples positive; estimated 5% involvement
3+3=6 Gleason
TR2C Stage
RRLP on 2/21/2008 with excellent prognosis (no evidence;margins and other tissue clear) on cancer clearance and sparing of both nerve bundles
Post-OP:Actual involvement 15%, one lobe only; PCa fully contained in prostate-no involvement with other tissues and margins clear
Catheter out on 3/2/2008; fully continent by 3/31/2008
Undetectable PSA on 3/31/2008
Working on ED: 20MG Levitra every other day; Vacuum pump almost daily; some improvement, but not there yet. Started using MUSE with some success, 11/1/2008
2d undectable PSA on 7/21/2008
3d undectable PSA on 10/30/2008


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 12/23/2008 10:00 PM (GMT -6)   
Dear Davisal and Iwant..... i understand, being a wife, what you are going through. I have been in this with my dear husband Pete for almost seven years. The first thing is: Try not to second guess your treatment.....You did what you thought was best at the time. Forge ahead with what you have to deal with now. Continually remind yourself that things will get better, and that you will overcome the problems. That, and, as I always say: Get the pomegranite juice and the blueberries going......Try to laugh more....Laughter is an instant vacation. even for a few seconds...and that helps your immune system....See friends, and talk about your prostate. Men need to hear it from others. Women talk about breast cancer....men should be able to discuss the Pca. Pete tells almost every man or young man he talks to about it..... And remember, that wives don't always need to have intercourse. We love to be treated sweetly and told that you love us, and that we are pretty. That will go a long way in your healing yourself!! Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
Waiting to see if AUS gets better results
Complete hip replacement surgery coming up Jan 9, 2009


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 12/23/2008 10:04 PM (GMT -6)   
Davisal - have patience! I know that is easier said than done, but hang in there. It has to get better! I hope that all of the responses and others' experiences will help you deal with this. take care....kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump
8/07 - 1 yr PSA <0.1
9/1/07 - achieved erection with Viagra - no pump!
3/08 - 18 mo PSA <0.1
switched to Levitra - works much better than Viagra & Cialis - fewer side affects
summer of 2008 - have had a few erections with no drugs! yeah!!
8/08 - 2 yr PSA <0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 12/23/2008 11:44 PM (GMT -6)   
This is to iwant:
Glad you decided to repost. This is a good place to be, a good place to compare notes, to talk of sucesses, to talk of failures, to encourage others, and to get encouragement, and a good place to vent. I think all of us here, have experienced the range of emotions concerning our PC experience that you wrote. Before my treatment, and perhaps because I live in the world of professional accounting, everything was a number and a statistic and a percentage in my life. Now I am part of those statistics, and I don't always end up in the group of percentages I want to be. It seems like, many times in my own life, I end up being in the ultra rare group of statistics. So be it. Your anger and concern are quite real to me and I am sure all the others here, this whole PC thing isn't fair, and it certainly wasn't your fault, but we all have to learn to accept it as our new reality, and learn to deal with the changes in our lives with the side affects and aftermath of our selected treatments. It is easy to 2nd guess, I still do that often when I have my setbacks, its like, why did I ever go for psa tests at age 50 and then get dx at 56, but in reality, that very step probably saved my life. I knew the risks associated with my non-nerve sparing open surgery, knew it well, but after already having had cancer 3x previous and radiation treatments not related to PC in the past, I couldn't live on knowing that I had a pretty good dose of PC going on inside my body. Please stay with us here, its been a big big help to me, and think many if not all the others would agree on their own. Keep fighting the fight, we might not be able to win every battle, but we can win the war. Good luck to you, and keep posting.

David in SC
Age 56, 56 at DX
 
PSA 2007 5.8
PSA 9-2008 14.9
 
3rd Biopsy 9-2008 Positive
7 of 7 cores positive, ranging from 40 - 90%
2 tumours noted, Gleason 4+3 and 3+4
 
Open RP surgery completed on Friday, November 14, 2008 at
St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon,
Non-nerve sparing, 4 days in hospital, staples removed 11/24/8,
Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08 - uncertain of what went wrong.
 
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes. Left lobe: infiltrating tumor miscroscopically appears to extend to marked left posterior margin
 
First PSA Post Surgery  Scheduled for 1/5/9
 
 


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 375
   Posted 1/10/2009 10:09 PM (GMT -6)   

Yes, Yes the choices we make with this disease can consume us with regrets years later. In my case I went with the robotic surgery over open surgery (even though my local urologist was considered the best open surgeon in our town) because I needed the quicker recovery to go back to work and make money ASAP and because I thought the outcomes were better for the robotic versus open procedure. I now realize that the data doesn't show any better outcomes for potency and continence for the robot procedure. Even though the robotic surgeon was the most experienced guy in the neighboring big city (over 300) maybe I would have done better with the local guy. My surgery was on 09/11/08, psa=2.85, 2/12 cores positive on R side, 1 core=5% ca, other core=25% ca, gleason score 3+3=6, clinical stage T1c, pathological stage T2a, no spread, bilateral nerve sparing, first post-op psa=.01. Incontinence gone in December, no pads, no nothing now. ED still remains, no spontaneous erections, doing daily viagra and 2x/wk trimix/bimix injections. My penis does seem to curve more than before. Is that Peyrione's Disease? I fear that I will be using these injections forever and that maybe I am doing more harm than good because of the risk of Peyrione's Disease. Does anybody else know about the connection between injections and Peyrione's? Is there a treatment? Can I prevent it somehow?    Disappointed with ED outcome from robotic surgery.................     


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 1/10/2009 11:02 PM (GMT -6)   
mspt98
you need to be patient with the ED. Don't get frustrated. With your stats, it sounds like you have an excellent chance to recover function.

I had zero function at 4 months. It took 11 months for me to get something useable.
I tried a few injections at 6 months, but didn't like them-no blood to head of penis. I think you need to be careful with them as they could contribute to Peyrione's disease. That's why I stopped. I was getting a curve.

Davisal
I hope things are improving for you.
Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.

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