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bluebird123
Regular Member


Date Joined Aug 2012
Total Posts : 425
   Posted 12/6/2012 10:50 AM (GMT -6)   
I'm sure that this topic has been discussed before but here is our situation. My husband had surgery 6 weeks ago. He is still leaking. When I ask him if it is getting better he says that he does not think so, but he isn't sure. He is wearing Depends pants but he changes them at the first drop of liquid so the number of pants he goes through gives no clear indication of his progress. He might be able to wear just a pad but he has not tried. He is not gushing but he is leaking. He will start biofeedback in January (they are booked up until then). Has anyone tried biofeedback and is it effective? I feel that he is a bit behind the norm for improvement - the guys that he spoke to were out of pads by 6 weeks. At what point in time should he worry that things may not improve much? Any feedback is appreciated.

My husband also developed urinary frequency after surgery but I have noticed that it getting much better. I certainly can't evaluate how much he leaks but even if he has not noticed the improvement in frequency I can see that it is significantly better.

Thanks for any replies.

Post Edited (bluebird123) : 12/6/2012 8:13:19 PM (GMT-7)


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 5921
   Posted 12/6/2012 11:12 AM (GMT -6)   
The "leak free" mark can be anywhere from the moment the catheter is pulled to never. Everyone is different. I will agree that a lot of guys in public claim everything is great, but in reality, it ain't so. Listen to guys at a support group, not the crew at the golf course.
 
I am 37 months out, and I still leak. I have to use from 1 to 3 pads in a day, with no pattern.
 
Instead of just the Depends pant, have him add a men's guard, and let that guard go until a little closer to wet just to get some perspective. The pant gives a backup, and the pad can be switched out easily. That was my scheme for the first 5 months, as I had great days (3 pads) and then the next, floods.
 
Yes, the feedback training with a physical therapist can be very useful. I worked with a PT nurse (an RN) at the hospital group where I had my surgery to improve the "quality" / effectiveness of my kegels. That marked a major improvement for me.
Moderator - Prostate Cancer
(Not a medical professional)

DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808
HT (Lupron) 6-mo injection 9/12

Susan R
Veteran Member


Date Joined Dec 2010
Total Posts : 510
   Posted 12/6/2012 6:03 PM (GMT -6)   
Michaels dr prescribed imipramine to help with leaking. You could talk to his URO to see what his thoughts are about your hubby taking that oral medication. It seemed to really help Michael while he was taking it. He stopped taking it and now has some leaking again. He returned to his Uro and he prescribed it again. It is at least something to ask about if you are concerned but I don't think the 6 week mark is far enough into recovery to panic just yet.

Hope this helps
Susan
Husband 39 at diagnosis 12/2010.
No symptoms, PSA 18 in 10/2010
one month antibiotic then PSA 12.6 in 11/2010
biopsy end of 11/2010 Gleason 6
Da Vinci prostatectomy 2/2/2011
Taking 20 mg levitra daily June 2011.
Feb 2012 - 1 year post surgery PSA = undetectable
Low T - started Androgel Feb 2012
Started Trimix Feb 2012


staging: pT2aNo, Gleason6

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 982
   Posted 12/6/2012 8:50 PM (GMT -6)   
142 is right; everybody's different. However, only a lucky few are dry six weeks after surgery. Most men take 3-4 months, and some can take the better part of a year. The unlucky ones never get dry, and many of them resort to sling surgery at some point, which can be very effective.

Mr. Bluebird should be doing kegel exercises (but not overdoing them). He should also try pads; they're a lot more comfortable, and they'll probably get the job done for him.

Most of us here know what a drag incontinence can be. Here's hoping your man will dry up soon. Chances are pretty good that he will.

Best,

Jonathan
Age 57

Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------
open RP at Cleveland Clinic 11/10
Post-surgical pathology: Gleason 7 (3+4)
Three positive margins; Stage T2c(+)
PSA since surgery: <.03

AdVance sling: 12/11 -- Much drier than before

HCV
Regular Member


Date Joined Jul 2012
Total Posts : 114
   Posted 12/6/2012 9:25 PM (GMT -6)   
I am seven months out and at 6 weeks I too was very frustrated.  Many on this sight brag about being dry at 6 weeks but a urologist friend ( not my surgeon) told me its really four months in the overwhelming maority. I was squirting and leaking until about 4 months.  Then I could hold it but had to urinate every 90 minutes.  At seven months I sleep all night and really never leak unless I am vigorously working out.  I can to 2 to 3 hours without urinating now. I am not quite normal but I am getting there.  At your husbands stage I was VERY discouraged but I had been misled to believe that all would be well by two months.  Be patient - but it does suck particularly if you are working or trying to live a real life.
 
Hang in there.  Almost everyone reaches continence.  In my case continence worries have given way to ED worries at this point.
Age 53. Robotic RP 4/24/12. Gleason 3+3 preop, 3+4 post. 10% volume, margins clear, nodes neg, no perineural inv, ST clear. First PSA .02. Leaking undercontrol for the most part. ED present.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2621
   Posted 12/6/2012 10:06 PM (GMT -6)   
Glad your husband made it to the other side. Incontinence sucks.

Patience is the key here. Took me 8 months, and I still am prone to squirt a little when I exert or twist funny. I finally have concluded that wearing a pad is easier than worrying about a wet spot on my pants. Still am willing to trade a few drips in the pants for low PSA numbers.

Pads are certainly a cheaper option, and easier to change at work or in public than depends. Always have an extra in the car, and if need be, in a pocket, but I only use 1 a day, and not very much of one at that.

I have also found iced tea and sweet and low make it worse. No a drinker, but some say that alcohol also makes it worse.

Good luck to you. Odds are that your husband will regain continence. It is just very disconcerting for an adult male to have wet pants. All that potty training down the drain. ( kind of a little joke )
Goodlife


Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9 Da Vinci, Cleve.Cl 4/14/09 pT3a NO MX,
Neg Margins, PSA 6 wk,<.03, 3 mo. <.01 (dif lab),
mo. <.03 , 6 mo. <.01, No pads, 1/1/10, 9 mo. < .01, 1 year .01, 15 mo. <.01, 18 mo. .01, 21 mo. .02, 24 mo. .03, 27 mo. .02 , 30 mo .02, 33 mo .04, 36 mo. .06. 37 mo. .06
SRT begun 6/14/12. PSA .04 9/15/12 .03 10/20

Tigerfan53
Veteran Member


Date Joined Jan 2011
Total Posts : 820
   Posted 12/7/2012 1:01 AM (GMT -6)   
Bluebird -- yep everyone is different. He also could try cutting back on his fluid intake, but at the same time increase the percentage of water. Avoid caffeine and alcohol. He should do his Kegels in different positions; lying down, sitting, standing, and walking.

For what it's worth: It took me a little over 2 months to get down to one pad a day, and almost 5 months before I stopped wearing pads - and I still have an occasional leak.

Best -- Tigerfan
Diagnosed Dec 2010 at age 53
09/2010 PSA 4.8
11/2010 PSA 5.1
11/2010 PSA 5.3 after antibiotics
12/2010 Biopsy: 50% in 1 of 12 cores, PIN, G6, T1c
03/2011 PSA 5.6
06/2011 RALP negative margins, G6, pT2b, PNI
09/2011 PSA < 0.05
12/2011 PSA < 0.05
06/2012 PSA < 0.05

bluebird123
Regular Member


Date Joined Aug 2012
Total Posts : 425
   Posted 12/7/2012 1:07 AM (GMT -6)   
Thanks for the replies. He is encouraged; now we know what to expect.
7/12 PSA 5.2
8/12 Biopsy, 7 out of 12 cores positive, 5% to 70%, 6 cores G6 and 1 core G7 (3+4)
59 years old
RRP October 2012, Gleason 3+4, negative margins

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2087
   Posted 12/7/2012 5:04 AM (GMT -6)   
I think we've all had different experiences with continence as far as how long it takes, where we eventually get to and how we use pads, so be patient.
I was dry at night after the cath came out, but it took a couple of months before I dared go pad free in the day time, and then that was only on the basis of going to the bathroom every hour (but I always had to go more frequently than other guys my whole life.)
Two years on from SRT I realised/accepted I was too damp and started wearing a (Tena) pad, one per day. Much more confident now that I don't have to worry about getting damp patches on clothes. (Don't change the pad unless it gets smelly.) Also keep spares in car, jackets etc as better safe than sorry.
Before surgery the guy in charge of my case said it was unlikely I would ever be 100% continent, as there would most likely be stress incontience from sneezing, coughing etc, and it was also likely that I might have a bad day once in a while. That was a good call, as sometimes, for a couple of hours a week I feel like I did the day after the cath came out and have very little control, yet other times I can go for several hours without needing a pee or leaking. Simialrily at night it can be unpredictable. One night I have to get up to pee six times the next night just once.

As for meds to help I think you are still very early on so I'd wait. It can only be about 5 weeks since the cath came out and he's had an infection, so he's not even finished healing yet.

And as for detecting improvement, well the only easy way to know one way or the other is probably to take notes, i.e. keep some kind of pee diary. (How often how much etc). But the key is not to do it every day, or you get anious that you can't spot any change as the changes are so small. Do it now and then do it again in a month and I bet they'll be a difference. (I sure noticed a change when comparing two sets of notes a few months apart told me I was down from 16 to 11 visits to the bathroom per 24 hours, yet it had felt like I was going just as often)

Also as you are so close to surgery I'm assuming he hasn't had that first PSA test yet and I think it's fair to say that while we are worrying about PSA tests our bladders can be as unsetteld as we are.

All the best
Alf
Age dx48
04/09 PSA 8.6, DRE neg. Biop 2/12 pos. G6
07/09 RALP in Amsterdam
PostOp G=3+4 Bladder neck & SVI -T3b. No PNI No vasc.inv. Clear margins
09/09 No pads
07/12 1 pad per day
11/09 PSA 0.1
03/10 PSA 0.4 04/10 CT.
Summer/10 66Gy SRT
09/10 PSA<0.1
01/11 PSA<0.1
04/11 PSA<0.1
07/11 PSA<0.1
10/11 PSA<0.1
03/12 PSA<0.1
08/12 PSA<0.01
No real ED
englishalf.blogspot.nl/

PeterDisAbelard.
Forum Moderator


Date Joined Jul 2012
Total Posts : 3904
   Posted 12/7/2012 10:23 AM (GMT -6)   
Biofeedback does help somewhat. Before surgery he had two urinary sphincters controlled by two different sets of nerves. (And with most men of our age the prostate provides a bit of helpful back pressure, too). Now one of the sphincters is gone as is the prostate. It takes a while to learn to rely on the nerve that is still hooked up. (It's the same nerve bundle as the anus, thus the problem post-RP men have passing gas without wetting themselves.) It also takes time for the traumatized muscle to get strong enough. Biofeedback helps identify the right nerve so the muscle can be exercised.

Another thing that biofeedback does (and perhaps the more helpful) is it gives a man something to do while he is waiting to heal. It helps him feel a bit less helpless.
60
Slow PSA rise 2007-2012: 1.4=>8
4 biopsies 2010-2012:
1)neg (inflammation observed),
2)neg,
3)positive one of 14 cores GS6(3+3) 3-4%, 2nd opinion GS7(3+4)
4)neg.
Moderate Pre-op ED
DaVinci RRP 6/14/12. left nerve spared
Post-op path: pT3a pN0 R1 GS9(4+5) Pos margins on rt
Start 24 mo ADT (Triple w/ Lupron) 7/26/12
Start adjuvant IMRT 10/17/12 done 12/13/12
Incontinent, Trimix, VED for Rehab

STW
Regular Member


Date Joined Jun 2009
Total Posts : 272
   Posted 12/7/2012 12:11 PM (GMT -6)   
Part of the issue may simply be language and expectations. dry, DRY, and no leaks may mean the same or different things to people.
As an example, I needed no pads overnight as soon as the catheter was out. However, I found that my legs acted like a pump handle, keeping my bladder empty and my pad full whenever I walked anywhere. I could make 10 steps to the toilet in the morning; 12 might have been too many.
(My brother got a real lesson in the leg pump when he took his kids trampolining sometime after surgery)

While I stopped using pads at week five it wasn't because I never had any leakage but simply because the leakage was little enough, when it happened, to stain my shorts without coming through to the outside. I can have issues when I cough or stretch or simply let my guard down when moving unexpectedly. Reflexes shut it down quickly enough.

I consider myself dry, small d. Leaks, occasionally, particularly if I don't take my time peeing or if I stretch without good muscle support to keep pressure off my bladder. I'm not DRY like I was before surgery and don't expect to be. My nether regions have been violated way too much to expect that. My wife simply uses borax in the wash to remove the dried stains and we move along.

I did keep a supply of pads at work for a year, however. Just because I was confident didn't mean I was foolhardy.



The couple of men I talk with about our experiences chuckle about

Gary M
New Member


Date Joined Jul 2012
Total Posts : 16
   Posted 12/7/2012 9:33 PM (GMT -6)   
It has been three weeks since my surgery and two weeks since the cath was removed.  I still have not been able to urinate in a restroom during the day.  Changing my "man pampers" 3 to 4 time a day.  At night it is a little better.  I get up 2 to 3 time a night and can urinate a little.  I was hoping it would be better during the day.  I guess I am still in the very early stages of healing and just have to be patient.    
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