Incontinence update

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Floyd
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 3/10/2010 5:52 PM (GMT -6)   
 I am now one month out from robotic RP and the incontinence persists unabatedly. Thanks to all of those who responded to my initial inquiries about this. I know that it may take some time for this to resolve and I am working hard to be patient. I am curious as to how the incontinence begins to improve and what will be noticed first. As of now I am able to hold urine and to fill my bladder while sitting or when supine but as soon as I stand my bladder will empty completely. If I make a strong effort with a Kegel contraction I can hold my bladder contents for about 30 seconds after standing up from sitting and make it to the BR to void but any longer than that and it all empties into the pad. If I am mostly upright with walking, etc, I constantly leak and never even cause my bladder to fill at all. When improvement begins to return do you first notice a temporary lack of leaking when standing or what? I am continuing to walk and to do the kegels as directed and look foreward to the light at the end of this tunnel. I am going through 12 or so pads a day while working in the 12 hour shifts that I work; I wish that I had bought stock in the Depends company prior to surgery.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4119
   Posted 3/10/2010 6:02 PM (GMT -6)   
Wow floyd what a story. I wish I had a suggestion that I knew would work but I don't. I am sure someone will jump in and let you know. I guess the best you can do at this point is try as best you can to hold the urine to try to get then muscles to learn how to hold the urine. I found that walking and keeping my abs tight helped.

Best uf luck Floyd. Do keep us posted.

Cajun Jeff
AGE:58, 57dx. PSA 5.4
Biopsy: 9/08 Gleason 3+4=7
open RP: 10?08 Nerve sparing. Path Report : GS 3+3=6 Stg pt2c margins clear
Cath for 10 day. Dry day after removal of Cath
PSA @ 3 months <0.1
6 months <0.1
9 months <0.1
12 months <0.1
16 months <0.1

ED Started VED at 3 months, pills followed VCL none did much, tried MUSE at 9 months (YUCK) Hated it. 15 months out injections Caveject (succecc)


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 3/10/2010 8:34 PM (GMT -6)   
The first rule about what to expect is that everybody is different. At your stage you are fighting two problems. First your body still has a lot of healing left to do so time and patience will help. Second your brain is now getting different signals that it did before surgery and has to re-learn how to take control.

For most guys, control is easier early in the day and worst when tired, so early is when you should focus on what you are feeling and thoughts of control. You are already practicing when going from sitting to standing and that is good. Pay attention to your body, what makes control easier when standing up? Have a mental drill just before you stand.

Finally, don't think about it all the time. The pads are there exactly because they let you go on with life.
Wishing you the best possible recovery.
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day
9 mo. PSA 0.00 -- 1 light pad/day ED remains


keysailfisher
Regular Member


Date Joined Dec 2009
Total Posts : 347
   Posted 3/10/2010 9:00 PM (GMT -6)   
I'm at about 6 weeks out of surgery leaking pretty pad the first 2 weeks 9/10 pads a day, noticable improvement to 3/4 pads a day and holding (no pun intended). But to me that was a big improvement. Mostly dry at night get up twice. I think the kegels do help, I hope things improve soon for you.
 
Neal
age 45
psa 3.09
Biopsy results 12/9
Left side base 3+3=6 21% 2/2 cores positive
Left side mid  3+3=6 100% 2/2 cores positive
Left side apex 3+4=7 88% 2/2 cores positive
Right side - 0/6
CT & Bone scan negative
Davinci Feb. 5th 2010/ cath removal 2/16
 
Gleason-3+4=7
Extent of tumor-Bilateral
Extraprostatic Extension-Absent
Seminal Vesicles-Negative for tumor
Surgical Margins-Rt apical margin focally positive
lymphovascular invasion-Suspicious in areas of capsular involvement
Regional lymph nodes-One node negative
Stage-T2c NO Mx
Incontinence-yes


seaofpee
New Member


Date Joined Feb 2010
Total Posts : 17
   Posted 3/10/2010 11:54 PM (GMT -6)   
That is quite a story. I'am 7 weeks post op. and using 6 to 8 diapers and day. more if i do alot of walking. Still can't work due to nature of job. Will keep in touch so we can compare progress.
First surgery October 09, that's when they found psa of 5.4
December biopsy  gleason  7  3+4
January 20 rp
psa 2 weeks after 0.06 Thank God.
I feel blessed.  The surgeon said the cancer was starting to come out of the prostate.
ed. still there no progress uro says pump will help
age 58
cialis caused 3 day headache
surgery done in Denver


Floyd
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 3/11/2010 12:51 AM (GMT -6)   
  Thanks to all for sharing your experiences and for the support. It helps a lot to know that you are not alone dealing with this unfortunately common problem. Before surgery I think that I was more concerned about post op ED rather than incontinence even though I knew incontinence was likely for a time. You just don`t realize the extent that this can affect your quality of life until you experience it. It is good to know that it is likely to soon improve.

Heavy Leaker
Regular Member


Date Joined Feb 2010
Total Posts : 63
   Posted 3/11/2010 7:53 AM (GMT -6)   
I was also more concerned about ED before the surgery.  I was led to believe that 98% of men are dry 1 year after surgery.  I am now 4 & 1/2 months post robotic surgery & go through about 5 to 7 pads a day if I am active.  If I have a sedentary day it might be 3 pads.  I think I have seen a very minor improvement recently.  Before I went on this forum I was extremely depressed because I could not figure out why I was one of the minority of the 2 percenters.  I think that there is a much higher percentage of incontinence than the surgeons lead you to believe.  I hope that I will show improvement over the coming months.  I feel sorry for all my fellow men who have incontinence but strangely, I am less depressed now.  Perhaps it's because I don't feel as much that I am singled out for this problem.  In addition, when I see what types of complications many men are having due to PCa, I feel lucky to only be dealing with incontinence.  It seems so unfair to have this side effect because I never felt sick until after the surgery.  One day you go into surgery as a healthy man (at least you have no symptoms) & the next day your life has changed.
 
For you guys who had surgery more than a year ago, did any of you take 6 months or longer to start showing real improvement on the incontinence front?  A lot of us are hoping for some good news here!
4 biopsies over 4 years starting in 2006, 4th biopsy showed 5% of one core Gleason 3+3=6.  PSA in 2005 6.0, rose to PSA 18 shortly before surgery.  Chose surgery over radiation due to conflicts in PSA versus biopsies.  PSA 18, Gleason 3+3+6, Age 58, Rising PSA since 1999, Biopsy 5% of one core
Robotic surgery 10/26/09  T2B Tumor 30% of prostate  involving left & right lobes  NOMX Gleason 3+4=7  Urethral Resection margins &  resection surface clean Seminal vessicles clean.


cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 3/11/2010 6:49 PM (GMT -6)   
Hey Floyd,

I was exactly at one month where you are now. I am now coming up on five months. In that four month interim I have gotten to the point where I can walk normally several hundred yards without leaking. The maddening thing about it is that I can only do that if my bladder has a load. Otherwise when walking or exercising with an empty bladder I leak everything. You do seem to be on the right track and most guys have a big improvement between three and six months.

Steve

bemis
Regular Member


Date Joined Feb 2010
Total Posts : 38
   Posted 3/11/2010 7:29 PM (GMT -6)   
Floyd I'm at 7 weeks and my leaking is similer to yours.I may be noticeing a small difference,or I may be dealing with pads better I'm not sure which.I use a pad with a depend, I have also been useing the bathroom frequently.My Dr said to try and get on a 3 hour schedual.when I try that, as soon as I stand and start walking it all leaks out.Sometimes when I'm doing the kegal I can't start the flow after I have stoped it,Its a wierd feeling because I still have a full bladder? Also I have had a constant slight burning in the end of my penis since the catheter came out ? I just thought ,I guess we all need to stay out of the pool until we are contenent ,what do you think about the ocean? DICK
age 55 /psa 10-09 5.4/biopsy 11-09 Gleson 3+3=6 3+4=7/ Radical prostateectomy 1/22/10/pathology positive margins and extraprostatic extension pY3a


Ricky2
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 3/11/2010 10:10 PM (GMT -6)   
Floyd,

i know how you feel. Leaking has a big impact on quality of life and how you feel about yourself. For me, leaking was unabated when up and about, for about 4 weeks after the cath came out. Then over the next 3-4 weeks I noticed more urine retained and less that leaked out. I did not need any pads after 8 weeks. Now I very rarely will have a drop or 2 leak out.. You will get there. good luck!

Ricky
Age 70

PSA 5/2008- 3.6, PSA 7/2009- 6.1, retested 9/2009-5.1.
Biopsy 9/2009. 4 of 12 positive. Gleason 3+4=7
CT and bone scan negative.
Robotic De Vince Surgery 10/29/2009. 1 night in hospital. No pain. Cath out on 11/6
Pathology Report: Gleason score 3+4. Margins slightly involved <.1mm to .25mm. Perineural invasion present, stage pT2c. Tumor 18%. Seminal Vesicle - absent, Lymph Nodes 0 of 6.
Continence- first 4 weeks after cath out Dry at night, rest of time, bladder held nothing. 6-7 pads per day. as of 12/30 no pads most of time. almost dry except for a few drips. I keep doing Kegels.
ED. Started VED on 12/17/2009. Every other day for 15 min. Cialis .20 mm twice a week
PSA 02/08/2010 <.1
02/22/10 Trimex injection .2ml less than 50% just a little discomfort.


Floyd
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 3/12/2010 12:11 AM (GMT -6)   
Thanks to all. It helps a lot to hear from you and to know that things will improve with time. I was talking with my wife about the effects of this surgery and said that it takes your manhood from you with the ED and your dignity from you with the incontinence. But in refection it really can`t take either unless you let it I suppose. There are things a lot worse than peeing in your pants. Like Heavy Leaker said, the fact that you go from a normal life to these sudden changes with the surgery is hard to adjust to. But if it enables you to be there for your family and hopefully gets rid of the cancer it will be worth it.

kclvt
New Member


Date Joined Mar 2010
Total Posts : 1
   Posted 3/12/2010 10:17 PM (GMT -6)   
My husband had his prostate removed in May of 2003.  He still fights incontinence.  He wears a Depends 24/7.  He has tried having a sling surgically placed and that did not help him.  In 2008 his PSA went up to .3.  He went through 35 treatments of radiation and his PSA did not move.  Since the radiation his incontinence has worsened.  He wears 5 to 7 pads per day depending on his activity.  Is there anyone else out there that has experienced this for so long.  It doesn't stop him from doing anything but he is just so frustrated. He regrets ever having the operation......Any feed back would be appreciated.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 3/12/2010 10:24 PM (GMT -6)   
It took me 8 months to get it stopped, but I am pad free.

Because it was not good thing to work on industrial high voltaqe with wet pants, I actually went to a Cunningham clamp which gave me 7 to 8 hours a day of no leaks, while I built up my sphincter.

Patience is a tough thing here. Good luck !
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01


RHC Jr.
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted 3/14/2010 4:21 PM (GMT -6)   
Floyd:
 
My experience with the post-prostatectomy incontinence is very similar to yours - no retention while standing; some retention while sitting, and even more retention while prone, but immediate evacution upon standing.  The only difference in our situations is a major one - I am more than 1 yr. past my Da Vinci prostatectomy; you are just starting on your journey towards continence.  Based upon statistical evidence, you should succeed.  If not, just as I am doing, you will pursue solutions.  My current area of interest is autologous adult stem cell therapy.  You may be too early in the game for that approach.
 
Good luck, and I hope that you will have a quick and complete recovery.
 
RHC
Last PSA prior to biopsy  -  11.9
Biopsy  -  8/7/2008
Cancer findings at left lateral and left medial apex of prostate
Gleason score  -  3+3 = 6
Staging  -  T1c
Prostate size/weight  -  128 cc./ 99 grams
Bone and CT scans  -  9/12/2008  -  both clear
Age at biopsy  -  65         Health  -  Excellent (other PCa)  (Lift weights, play golf & tennis (incl. singles))
da Vinci RP surgery  -  12/15/2008 at Naples Hosp.
Surgeon  -  Dr. Wm. Figlesthaler
Hosp. Stay  -  1 night
Catheter removed  -  12/23/2008
Post-Op blood tests  -  2/2/2009, 5/7/2009,  8/12/2009 & 12/7/2009          PSA  -  undetectable
Completed 12 weeks biofeedback, coupled with electrical stimulation  
 


tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 3/14/2010 4:59 PM (GMT -6)   
I am one of the old timers here and unfortunately one of those that almost never got any improvement in either incontinence or ED. In my profile below you will see everything I tried. I was a constant leaker during the day but under control at night and that was the way from the start. I had sling surgery six weeks ago and it improved things to about 2-3 pads per day...not what I hoped. The ED is not a problem for either me or my wife, not very needy in that department at age 66. Will deal with that if the incontinence ever gets under control.
I have led a normal life all during time. Working and traveling full time, playing golf, chasing grandkids etc. You do learn to manage the incontinence. I used all forms of pads/Depends but also used a Cunningham clamp at work (office) and when traveling. Just bought a Dribblestop clamp I am now going to try but the 2-3 pads is really not that bad to deal with.
As other have said, cheer up and be glad you stay cancer free. Life goes on just fine.
I am encouraged to hear about the stem cell thing. Encouraging and I may hold off doing the AUS sphincter for a year or two and see what develops.
64  year old male in excellent physical condition.
PSA jumped  3 to 8 in one year
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP,  7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Largest tumor nodule: 1.3 cm. All margins negative.
Incontinence & ED. Dry nights , no control during day.
Imipremine and detrol, Phy ther. and kegals no help.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Incontinence symp. index severeity score=22
Rec. for sling surgery. Dr. does mostly InVance.
Researched and decided on either AdVance or Virtue.
Virtue sling surgery 2/3/10 NYU med center by Dr. Victor Nitti
 


tallguy
Regular Member


Date Joined Oct 2009
Total Posts : 419
   Posted 3/14/2010 4:59 PM (GMT -6)   
I am one of the old timers here and unfortunately one of those that almost never got any improvement in either incontinence or ED. In my profile below you will see everything I tried. I was a constant leaker during the day but under control at night and that was the way from the start. I had sling surgery six weeks ago and it improved things to about 2-3 pads per day...not what I hoped. The ED is not a problem for either me or my wife, not very needy in that department at age 66. Will deal with that if the incontinence ever gets under control.
I have led a normal life all during time. Working and traveling full time, playing golf, chasing grandkids etc. You do learn to manage the incontinence. I used all forms of pads/Depends but also used a Cunningham clamp at work (office) and when traveling. Just bought a Dribblestop clamp I am now going to try but the 2-3 pads is really not that bad to deal with.
As other have said, cheer up and be glad you stay cancer free. Life goes on just fine.
I am encouraged to hear about the stem cell thing. Encouraging and I may hold off doing the AUS sphincter for a year or two and see what develops.
64  year old male in excellent physical condition.
PSA jumped  3 to 8 in one year
pt2b NO Mx with a Gleason score 3+3=6.
DaVinci RP,  7/23/08. Tumor type: Acinar
size 5.5 cm x 5.7 cm weight: 77 gm.
Largest tumor nodule: 1.3 cm. All margins negative.
Incontinence & ED. Dry nights , no control during day.
Imipremine and detrol, Phy ther. and kegals no help.
FUDS and cystourethroscopy testing 10/09.
24 hr pad wt. 219gm. AUA sympton index 13/35=moderate
Incontinence symp. index severeity score=22
Rec. for sling surgery. Dr. does mostly InVance.
Researched and decided on either AdVance or Virtue.
Virtue sling surgery 2/3/10 NYU med center by Dr. Victor Nitti
 


polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 3/14/2010 8:45 PM (GMT -6)   
New guy to this forum
2 1/2 years ago I went into surgery to have my colon removed. Surgeon almost cancelled because of a growth in my abdomen. Put catheter in and drained out 2300 cc of urine. They never saw this much before. Over large prostate. Next two years I was opposte you guys...couldn't go at all. Had to do self-cath 3 or 4 tmes a day. Afraid of surgery to fix because of incontinence possibility. Then I ran into a guy that had prostate removal and was incontinent over 2 years. Switched Dr. and found out about a system that is an inflatable ring around the urethra. There is a squeeze ball in the scrotum to open the ring. Works fine for him. So I went for TURP surgery to open the prostate. I was lucky, everything went perfect with no incontinence. Had I not found out about this option I would still be using a catheter.

Why hasn't this been done for you guys?

Dan
Usually on Ostomy and Parkinson's forums

kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 3/14/2010 8:57 PM (GMT -6)   
    Hi Fellow Leakers!!!  My recomendations would be first of all take your time.  Give your body a year to heal and try to learn to work agian.  I would also look for a physical therapist that uses bio-feedback to show you how to work the pelvic floor muscles.  Then, if you feel you still need help I would highly recomend the AUS.  I would also find a Dr. that does the AUS on a "almost" daily basis.
 
   Feel free to drop me a line if you have any quesitons.  My e-mail is in my profile.
   KW
    43 at Dx and Surgery (RRP)
    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7
    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 
    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006
     Dec. 2006 – Oct. 2008 Cystoscope, Two Collagen injections,Second Opinion   
    Consultation for Incontinance at OU Medical Center, Bio-Feedback       
    training, Chiropractic, Accupuncture , AdVance Male Sling, Two More Collagen 
    injections, AUS Installed and Activated (Dr. Morey at UT Southwestern Dallas TX)
    All to try to resolve incontinence (using 6-8 Depends Guards a day)

    To Date All PSA's 0.00.

   http://www.healingwell.com/community/default.aspx?f=35&m=721171

    http://www.healingwell.com/community/default.aspx?f=35&m=978691


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 3/14/2010 10:02 PM (GMT -6)   
Hi Floyd,
Your experience is a lot like mine was. I was using about 10 to 12 pads per day, able to hold while lying or sitting. I kept a container to void in when I got up at night because I couldn't make it to the bathroom. about 3 months after surgery, with not much improvement, I came upon the Afex Incontinence System from another thread on this site. It was fairly comfortable and served me well for another 4 or 5 months.

Gradually my incontinence began to subside until I was able to drop the Afex system and use 1 pad per day. At this time, 15 months after surgery, I can do without any pads on most days. Sometimes I still use a pad depending upon how I feel or if I think I might be doing something stressful.

I've given up on the ED front. I've been 100 percent comatose in that department to date. At my age I don't really care about that.

Wishing you well,
Bob
Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Five PSA tests undetectable, latest Feb 5 (Whew!)


Runer
New Member


Date Joined Feb 2010
Total Posts : 19
   Posted 3/14/2010 10:39 PM (GMT -6)   
Suggestion for improvement.  I had my 6 week post op visit last Tuesday.  I told the DR I was going through 8 pads a day.  He was surprised.  He suggested that I make a conscious effort to go to the bathroom and push, any chance I got.  I did just that on Wednesday and the pads that needed changing after 2 hours on Tuesday, went on for 4 hours on Wednesday.  If I walk by the toilet I pop in and push. It has made a difference.
7/09---routine physical, 4.4 psa
11/5/09---diag: 1 out of 12 cores positive 3+3 Gleason
1/26/10 robotic prostatectomy. 3+3 Gleason, Clear margins
 

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