Incontinence Question

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MichGuy
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 2/5/2009 2:28 PM (GMT -6)   
I haven't yet had my surgery, but it is scheduled for early March. I'm curious and confused about Kegels and incontinence. After a radical prostatectomy, do you stay continent by essentially doing a Kegel contraction most of the time, or does continence feel the same as it did prior to surgery? In other words, do you have to continually "squeeze" to hold the urine in, or does the remaining sphincter ultimately work "naturally" and unconsciously?

Thanks to all of you. I have been more of a lurker than a poster, but I have learned a lot and wish you all the best.
Age: 59, 59 at DX
PSA: 1/20/00 7.9, 7/22/00 3.3, 10/25/01 4.9, 10/19/04 5.1, 9/26/07 5.98, 8/28/08 7.68, 9/23/08 7.36, 10/23/08 8.64, 12/18/08 6.39
Prostate size: 96cc
Biopsy: 11/7/08 Positive 2 of 15 cores, both in rt apex, composite tumor quantity 5% prostate involved, Gleason 7 (3+4), Gleason pattern 4 accounts for 15% of tumor
Stage: T1c


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/5/2009 2:46 PM (GMT -6)   
In my case, I could feel the sphincter working as soon as the catheter tube was out. It took a couple days for the brain and the body to figure it out, but it quickly started with a subconscious control, just like we have before treatment. I never did have to think to keep it in, except when I was gonna do something that would trigger a leak, then I would clamp down consciously. As time went by, it became just like before, no thought to it. I was one of the fortunate ones who was dry within a few days of removal, though.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


MichGuy
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 2/5/2009 2:52 PM (GMT -6)   
Thanks James. I have an especially large prostate like yours and I understand that could make things worse. It looks like that wasn't an issue with you and it gives me some encouragement.
Age: 59, 59 at DX
PSA: 1/20/00 7.9, 7/22/00 3.3, 10/25/01 4.9, 10/19/04 5.1, 9/26/07 5.98, 8/28/08 7.68, 9/23/08 7.36, 10/23/08 8.64, 12/18/08 6.39
Prostate size: 96cc
Biopsy: 11/7/08 Positive 2 of 15 cores, both in rt apex, composite tumor quantity 5% prostate involved, Gleason 7 (3+4), Gleason pattern 4 accounts for 15% of tumor
Stage: T1c


spisam
Regular Member


Date Joined Jan 2009
Total Posts : 47
   Posted 2/5/2009 2:54 PM (GMT -6)   
I just had my 4 week aniversary of robotic surgery and I still leak. I'm dry at night, one pad in the morning and 4 to 5 pads in the afternoon and early evening. My concern is that there is no urge to urinate. No feelings. The signal I used to get to urinate before surgery is gone. Therefore, my leakage is more of not knowing I have to go.

On the ED side, I take viagra 3 times a week. Thus far I've been lucky and have had strong erections. The surgeon told me no sex for 6 weeks so its wasted for now. My concern is getting an erection then begining to leak. My wife will not appreciate a shower. Is my fear real?

Sam

RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 2/5/2009 3:00 PM (GMT -6)   
I am with James C. At first and I tried not to think about it and found myself doing a little too much squirting. When lying down or sitting there was absolutely no thought and dryness was present, but upon standing I found myself concentrating on holding the muscles especially when getting up from a chair. This was also true when exercising, picking up things, or longer walks. As time has gone on and gradual improvement has been made the thoughts on squeezing have become less and less. I think the squeezing goes on but becomes more in the subconscious.

As far as the feeling down there, I cannot tell the difference really post to pre surgery other than the tendency to occasionally and usually unexpectedly release small quantities of fluid. The valve system is just not quite as tight or certain as before.

RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 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) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.01 10/30/2008


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/5/2009 3:09 PM (GMT -6)   
One of my problems, 2 1/2 weeks out from my last catheter, is that I get an urge to pee, but it can mean of one things. I can try to go, and nothing is there. I try to go, and just a little comes out. I try to go, and its a lot. Right now, I can't tell the difference by feeling between the 3 versions. I am dry every night without a question. Takes me longer to pee than pre surgery, but then I had all those blockage issues and the corrective surgery, so perhaps this is the new normal for me. Just came back from 4 hour outing. Not sure how manny times I took a leak, perhaps 3? But back home, and the pad I put on is all dry. Now that I am home for the day, I won't have a pad on. Just so different with everybody here, no right or wrong. I am finding, the less I think about it, the better I do. In the "old days", I never sat around thinking about taking a leak. If I needed to, I did. And then, I had the bladder of a thousand camels.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/5/2009 3:46 PM (GMT -6)   
Sam, leaking during intercourse or foreplay is a real possibility and several guys have that problem, including me at times. Some of the guys use condoms during sex, some have understanding wives who are not put off by sterile urine leaking inside them and some who wear very small penis rings during sex. Those rings cut off the flow or urine but allow for sex as usual. You don't have ejaculations now anyway, so there's no problem with cutting off the flow. Leaking during sex is a little secret that most guys don't anticipate or have been warned about. When I am approaching orgasm, I have learned/trained to clamp down on the muscles to hold the urine in. Most times it works, but when it doesn't it's no big deal for us. Others may be different. Urinating just before sex or entry may help some.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/5/2009 3:54 PM (GMT -6)   
James,
Was just reading your post above. Seems there are lots of little details that they don't tell us men about with all these side affects and some of the things mentioned here. Again, so many versions, so many variables, makes it very different recovering from PC than so many other ailments or even cancers.

David
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/5/2009 3:59 PM (GMT -6)   
David, I am thinking of making a list of things we can get blindsided by or not know to ask about when getting the RRP surgery, both open and robotic. yeah
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/5/2009 4:11 PM (GMT -6)   
James,
Excellent idea. We have a very experienced group here, and we should glean from the collective knowledge base. We could probably put together our own online guide on a patient-patient basis, to guide both the new to PC and to anyone at any stage along the way.

David
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


sandstorm
Regular Member


Date Joined Dec 2008
Total Posts : 194
   Posted 2/5/2009 5:32 PM (GMT -6)   
MichGuy,

I'm 3 1/2 weeks post-op. I don't have to think about squeezing a kegel to hold it in but I still need a pad a day. At first a sneeze, a cough, or just standing up from sitting caused a squirt or leakage. Now only an unusual strain or if I get real tired (or have an extra cocktail) will cause leakage. No problem in knowing when to go.
Age at DX 57
5-18-07 PSA 7.7
5-06-08 PSA 4.6  8% free psa, but stable
10-23-08 PSA 5.65 4% free psa
11-04-08 biopsy
11-11-08 2 of 12 cores positive
Gleason 3+3  6  stage t1c / post-op 3+4  7  stage t2c
CT and Bone scan negative
Da Vinci RRP 01-09-09
Catheter removed 1-15-09
Pathology Report says it's gone!
First Post-op PSA due 2-17-09


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 2/5/2009 5:40 PM (GMT -6)   
Rest assured, for the vast majority of guys, the sphincter and the whole issue goes back to presurgery sensations. I don't even think about it during the day. I do pee more often than before, but our bladders are smaller. One nice thing, is that I pee like a race horse now. Huge, fast stream. I'm done in seconds....even faster than my 15 year old son! Most guys have small leaks that often don't even get outside the penis. You just feel urine in your urethra..but the leak is usually very, very small. Not enough to worry about. Yes, the sphincter that used to open to let out semen, now has to stay closed to keep urine in. You get that wave of horny hormones wash over you and *blip* you've dribbled a bit. You will learn to control that. Just urinate before sex. I have never ejaculated urine inside my wife, but with MB it has happened.
Trust me, these are all things that can be managed and ultimately have very affect on your life.
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
1/06 PSA 3.15
1/07 PSA 4.6 (Biopsy 3/07 just suspicious)
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
-totally contained to prostate,
-10% involvement in L & R Mid lobes
PSA 0 at nine months.
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - Took 100mg viagra every night. for several months
Totally usable erections at 10 weeks, which disappeared over the course of a month or two.
ED bounce is what they call it. Now, at one year, ED is fine with viagra.


Tobmeister
Regular Member


Date Joined Jan 2009
Total Posts : 41
   Posted 2/5/2009 5:44 PM (GMT -6)   
MichGuy

For me after catheter was removed it was like I felt sometimes like I had to pee or that something was coming out but it really wasn't. You are very self conscious at first for the few days to a week for sure and feel like you can't help but to try to hold it all the time. After awhile it becomes natural and you relax and don't think about it.

As my doctor put it, the sphincter left intact that we use was always a voluntary response by your body that you have to relearn.

I was lucky and thought urine would just always be pouring out but it just never happened. Possibly a result of tighter muscle control prior to surgery - I don't know. I have always done sit ups and it's all connected down there somehow.
Tom, age 51
Diagnosed 11/12/2008
PSA 2006 - 2.8, 2007 3.06, 2008 4.6 (remember the rate of increase is as important as the level), PSA free 8.7%
Family history - brother and uncle (remember family history is very important)
Gleason score 7 (4+3); 6 out of 19 cores sampled positive for cancer; perineural invasion present
Bone scan and CT scan both negative
Prostate mildly enlarged, DRE negative
DaVinci radical prostatectomy 12/30/2008 - left side nerves spared
Catheter removed 1/15/09 - no pain!

Post operative results:
Pathologic stage - T3aN0Mx
Post surgery biopsy - Bladder neck margin negative, lymph nodes negative, specimen confined, extracapsular extension positive, perineural invasion positive, seminal vesicle invasion negative, all margins negative, Gleason 3 + 3 = 6.

No incontinence problem within 1-2 weeks after catheter removal
1st post op PSA scheduled for 4/16/09

"Pick a good doctor and say your prayers"


DJBearGuy
Veteran Member


Date Joined Dec 2008
Total Posts : 821
   Posted 2/5/2009 7:38 PM (GMT -6)   
I have the same urge to pee confusion that David described. Can't tell from the urge if I need to go a lot or a little, at least not yet. I'm almost 8 weeks past surgery. The urge wakes me up at night, and I used to get up and go, but now I go back to sleep. I still wake up maybe 3x per night, but I go back to sleep, stay dry, and don't pee until I get up in the morning. I'm guessing that my bladder is still confused.

DJ
Diagnosis at age 53. PSA 2007 about 2; PSA 2008 4.3
Biopsy September 2008: 6 of 12 cores positive; Gleason 4+3 = 7
CT and Bone scan negative
Da Vinci surgery at City of Hope December 8, 2008
Radical prostatectomy and lymph node dissection
Catheter out on 7th day, replaced on 8th day, out again 14th day following negative cystogram
Pathology: pT2c; lymph nodes negative; margins involved; 41 grams, 8% involved by tumor; same Gleason 4+3=7
PSA 1/22/08 non-detectable! 8-)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/5/2009 7:46 PM (GMT -6)   
DJ, kind of glad I wasnt the only one with that confusion. I stay up late most nights, midnight to 1 AM, thats my normal even presurgery, so I go once last time, and then dont wake up or go again till 7 to 730 in the AM.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9/9
 
 


MichGuy
Regular Member


Date Joined Jan 2009
Total Posts : 51
   Posted 2/5/2009 8:15 PM (GMT -6)   
Thanks everyone. It looks like there's no one definitive answer to the question, but it's good to know the range of what to expect.

I like James' idea of "making a list of things we can get blindsided by". There is a tremendous amount of knowledge and experience on this board.
Age: 59, 59 at DX
PSA: 1/20/00 7.9, 7/22/00 3.3, 10/25/01 4.9, 10/19/04 5.1, 9/26/07 5.98, 8/28/08 7.68, 9/23/08 7.36, 10/23/08 8.64, 12/18/08 6.39
Prostate size: 96cc
Biopsy: 11/7/08 Positive 2 of 15 cores, both in rt apex, composite tumor quantity 5% prostate involved, Gleason 7 (3+4), Gleason pattern 4 accounts for 15% of tumor
Stage: T1c


Sleepytime
New Member


Date Joined Jan 2009
Total Posts : 12
   Posted 2/5/2009 8:40 PM (GMT -6)   
My catheter was removed 10 days following surgery and I had no control whatsoever. Fifteen hours later I was in the ER because I went into retention. Catheter was reinserted for another three weeks and then removed on 12/22/08 without any problems. My incontinence was a constant flow, whether sitting, standing, walking, or lying down, requiring diapers 24 hours a day. I was doing Kegels, but they didn't seem to be helping.

about a week after the catheter came out something just clicked. I found myself running to the men's room every 30-45 minutes. I was holding my water and I wasn't even THINKING about IT. Over the next two weeks I did not have a single accident during the day and only very minor leaks. That gave me the confidence to switch to a male guard. My pit stops are much less frequent now that my bladder has stretched back out. My day time pad has been dry for 2 weeks now.

There are a few things that are different though since the surgery. When I sense that I need to go I can only put it off for a few minutes, but I no longer have a shy bladder and like Paul1959 I pee like a race horse (huge stream). I've also found that my bowels have become very regular, but once again when I sense that I need to go I can only put it off for a few minutes.

Interesting side note... I had a 14 year history of a neurogenic bladder, mixed incontinence, and adult diapers going into the surgery, so my expectation was that I would lose what little control I had left. I did not expect that the surgery would cause the bladder to retrain itself, giving me back control. Just remember that every man in this forum has had a completely unique experience in their healing, and so will you.

Shawn
Age 54 - 6'2" 200lbs
Overall Heath Condition - Good

PSA monitored every 3-6 months starting 04/01/04
Important readings and actions:
10/18/04 - PSA 03.48
05/24/06 - PSA 04.92 - 08 sample biopsy: negative
05/10/07 - PSA 16.84 - 14 sample biopsy: negative
09/02/08 - PSA 26.54 - 16 sample biopsy: positive - GS 4+3=7 - Stage T2b
11/11/08 - PSA 37.95
11/17/08 - PSA 40.98 - (doubling time less than 8 weeks)
11/21/08 - non-nerve sparing Laparoscopic radical prostatectomy

Pathology GS 4+5=9 - Stage T3b N0 MX - bilateral lobes - perineural and seminal vesicle invasion - surgical margins: negative - largest tumor 2.1 CM

Catheter in for four weeks - only minor stress incontinence after 6 weeks

01/19/09 - 1st post-op PSA: less then 0.1
01/30/09 - started hormone therapy


NV RTRD 2007
Regular Member


Date Joined Jan 2009
Total Posts : 75
   Posted 2/5/2009 10:45 PM (GMT -6)   
In my case, 2 months after surgery, I am down to one pad a day. I could pretty much know when to go to the bathroom. But still need to wear one to catch ocassional "dribble". But sometimes, you feel like there was a squirt but when you look at your pad it seems like still dry. Like every one says, it's different for every patient. Hopefully, you're not going to go through some of the guys went through. Good Luck and we pray that your surgery will be a success.
Age 54; Age DX 53
PSA: May 07- 2.9; Dec 07-4.3; Jan 2008- 6.1; May 2008- 6.4; Sep 2008- 7.3 ; Sep 2008- 9.6
Bone Scan: Mar 2007- Normal without evidence of metastatic disease.
Biopsy Mar 2008: 6/6 core right gland- No evidence of malignancy; 5/6 core left gland- positive Gleason score 3+3=6 average tumor volume 5 mm.Clinical Stage II.
Transrectal ultrasound at UCSF Jun 2008: 7x14x10 mm hypoechoic lesion in left gland. DRE positive, PSA Density- 0.23 and Prostate volume - 27 CC.
RRP: 4 Dec 2008; Discharged - 8 Dec 2008; Cath removed- 18 Dec 08.
Pathology Report: Prostate- 33 grams; L/R pelvic lymph node -No evidence of malignancy; Right Lobe- No definite tumor; Adenocarcinoma, Gleason 3+4.
Post PSA: 7 Jan 2009 - <.05.

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