Incontinence after 14 months of RP

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My New Baby
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/12/2009 1:46 PM (GMT -6)   
I'm new and never being in a Forum before, excume if I do not follow proper protocol.
 
My sweetheart is at 14 months after RP, PSA ZERO, able to reach orgasm but discouraged by incontinence. I would love to help him. Any thoughts?
 
Thank you.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 8/12/2009 2:02 PM (GMT -6)   
Welcome to HW and the Forum. There's lots of info available here, using the search engine and currently in the threads concerning incontinence. I'm sure there will be several guys along shortly to help. For a starter, some more info would be helpful for those wishing to assist. How about making a signature listing the details and his stats in a concise post? Just go to the Control Panel, then Edit Profile, and scroll to the bottom, and fill in the signature box. That will be a great help.

How incontinent is he? Totally, a couple pads a day, a diaper, leaks when sneezing, spurting during intercourse?
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 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
22 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix 30/1/20-.10ml 2X week continues
PSA's: .04 each test since surgery


My New Baby
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/12/2009 2:30 PM (GMT -6)   
Thank you James.

He's 66 now. He underwent nerve sparing RP (DaVinci Surgery) on June 19, 2008. He's been incontinent from the moment the catheter came out. I can see the improvement as at the moment he needs 4 to 6 pads daily, but gets worse if more physical work is done. There is no leakage if sitting or lying down. We love dancing but he gets frustrated because leaking takes away the fun of doing those activities. When we go out he will use the "clamp" but it seems to be uncortable. The spurting during intercourse is not that often anymore.
Last visit to URO was July 29, 2009, PSA negligible. Next appointment is in July 2010 and I'm very happy about that.
Jose F. Age 66
DaVinci Surgery nerve sparing June 19, 2008
4 to 6 pads daily. No leakage if sitting or lying down.
Last visit to URO July 29, 2009, PSA undetectable!. Next appointment July 2010
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 8/12/2009 3:16 PM (GMT -6)   
Hmmm, 14 months or so post-surgery. That's a slow recovery, but statistics of guys here say that its on the slow side of normal. Has his recovery been slow but steady, or is what he got shortly after catheter removal? Has/did he do the Kegel exercises? He needs to keep kegeling. Several guys here have had bio-feedback type therapy to learn what muscles are used and how to retrain them. Maybe that would be something to explore? As aggravating as it seems, it may take longer- possibly 2 years or more to regain complete control. Sadly, in a few cases, control is never completely regained. As long as he is making steady, if slow progress , then don't give up hope. Lots of guys here have fought it for months, then seen dramatic, almost overnight successes.
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 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
22 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix 30/1/20-.10ml 2X week continues
PSA's: .04 each test since surgery


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/12/2009 3:36 PM (GMT -6)   
Hello new Friend, glad you found us.

Yes, your guy is a bit behind on the getting dry part, but there is so much variation among us here. I can see you been getting some good answers already. Please keep us posted of his progress, and hope you keep holding up as well too.

David in SC
Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, scarring closed up bladder neck, corrective laser surgery scheduled for 8/18,
meeting with Rad. Oncl on 8/14 about lastest PSA
 
 


My New Baby
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/12/2009 3:40 PM (GMT -6)   
He kegels but I always wonder if he is doing it right. A doctor said to kegel but anohter told him there is no benefit in doing it.
What is bio-feedback therapy?
Back in May he was doing better, about 3 pads/day. We were on vacation and he used the clamp a lot and also got very irritated due to heat and teh use of pads. We are back home now and he uses more pads. He is very unhappy ...

Thank you for your words of encouragement. I'll pass them to him.
Jose F. Age 66
DaVinci Surgery nerve sparing June 19, 2008
4 to 6 pads daily. No leakage if sitting or lying down.
Last visit to URO July 29, 2009, PSA undetectable!. Next appointment July 2010
 


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 8/12/2009 6:35 PM (GMT -6)   
I saw a lot of improvement when I got rid of the pads, start around the house and see how it goes.  I feel the pads almost encourage lack of control.  The other thing my doctor told me is figure out when the leaks accur and tighten up before, for example  when I bend over and tie my shoe was a likely time.
Dx'ed 5/08 one core 2%  out of 12  3+3 gleason
DREs all negative
PSA was in the 3-4 range then jumped to 7
I have the enlarged prostate, on the order of 100cc.  After taking Avodart for 3 months  my
PSA was cut in half.
I did Active S for a year but concluded that I didn't want a life
of biopsies and Uro meetings.
DaVinci on 6/24/09  UCI Med Center  Dr Ahlering, long surgery based on size and location
Final was 5% one side all clear, but had a huge 90 grm prostate
Now we work on pee control, ok at night but sitting is a big problem.


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4108
   Posted 8/12/2009 6:39 PM (GMT -6)   
I have to say I agree with Engineer55. Sometimes the phychological aspect of haveing the pad keeps of form fighting the battle.

jeff T
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
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 8/12/2009 7:14 PM (GMT -6)   
I suppose the best way of knowing if you are kegeling correctly is to pay close attention to what if feels like and what you do to cut off the flow of urine while peeing. Starting and stopping the flow can show you how a kegel will feel and what it takes to activate it. Hopefully someone who has had the bio therapy will be by soon. I don't know enough about it to describe it in helpful detail.
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 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
22 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix 30/1/20-.10ml 2X week continues
PSA's: .04 each test since surgery


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/12/2009 9:14 PM (GMT -6)   
Most doctors don't use the clamp because your body is not forced to use the sphinter to control urine.

I also used it for the first 3 or 4 weeks after catheter was removed, while I did my kegals. Good advice above on starting and stopping during urination. I then quit the clamp completely and went to pads. I quiclly was able to go to 1 or 2 pads a day.

The clamp may be kind of a crutch that doesn't force him and his body to squeeze when he needs to.
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
3 month PSA <.01 (different lab)


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 8/13/2009 9:31 PM (GMT -6)   
Welcome to HW,  Sorry to hear your man is still having trouble.  I know exactly what he is going through.  For us to understand where he is at.  Please give us some details as far as the ammount of leaking.  How many of what kind of pads is he using per day?  You can read my story at the links below.   The only reason I mention this is so you know there are things that can be done if need be.
 
Good Luck,
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


My New Baby
New Member


Date Joined Aug 2009
Total Posts : 4
   Posted 8/18/2009 2:10 PM (GMT -6)   
What a great and wonderful bunch you are!
Thank you, thank you, so much!
I have been telling him all about this site and the answers/comments I get and at least he does not feel that alone, you know what he is experiencing.

On the clamp: I agree with goodlife. He used the clamp for 5 weeks during our vacation and when we were back home and tried to used it less he was not holding anything. He’s using it very rarely now and is leaking less when he does not have the clamp.

When does leakage occur: It occurs when he bends, picks up heavy objects, walks, dance and when he is tired. He does not leak when is sitting or laying down, or when he’s biking. He uses 4 to 6 Tena men pads/day (It looks like a triangular pad) depending on the day’s activities.

Sep. 3 he has an appointment with a specialist to talk about surgery to control his incontinence. He’s concerned about going thru another surgery not knowing what is wrong and if the procedure is the appropriate one for him. No warranty …

I’ll encourage him to keep the kea gels. Last week he had a 3 pads day, we were very happy. The next day he started to fix the deck and place the railing on it, it was a 6 pads day.
Jose F. Age 66
DaVinci Surgery nerve sparing June 19, 2008
4 to 6 pads daily. No leakage if sitting or lying down.
Last visit to URO July 29, 2009, PSA undetectable!. Next appointment July 2010
 


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 8/18/2009 2:22 PM (GMT -6)   
Another thing that no one has mentioned, is he drinking alot of coffee, tea or soda every day? After my surgery I totally eliminated coffee, tea, soda, beer, etc until I was dry. Any sort of physical stress work would give me "leaks" for about 6 months after the surgery. So I learned to suppress my drinking desires if I was going to work outside.
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, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 8/18/2009 3:02 PM (GMT -6)   
There are several surgical interventions which include the pelvic sling and a urinary valve. Guys on this site have had success with both.

The Nurse Practitioner did Bio-feedback on me before surgery to get baseline data just in case I needed it. They stick on some electrodes down below (by now we have no modesty left) hook you to a computer and have your do kegels. You get a display on the computer screen that shows how long and how strong your contractions are and then you use the display to practice getting longer and stronger. Luckily I haven't needed that.

14 months is getting pretty much on the long side for so much incontinence and it seems to be cutting into his quality of life. I think it is definitely time to explore alternatives. Whatever he chooses, know that this group is here for you and your husband.
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


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 8/18/2009 8:46 PM (GMT -6)   
Hi, After surgery, my doctor recommended physical therapy to strengthen my pelvic muscles. I had bio feedback during those sessions. I gad one therapy session every week with specific exercises to do each day. I could see how much my kegel exercises were helping. There are sites that will show you the various kegel exercise that you can do. Good luck.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


Dry For Life
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/28/2009 9:46 PM (GMT -6)   
Being incontinent need not be a source of embarrassment or shame. The issue may be a temporary one that can be helped by the use of pelvic floor exercises and simple lifestyle changes, or it may be more serious, requiring surgery or other medical treatments. Whether it is temporary or permanent, you will likely need to make use of bladder weakness products for a period of time and, if so, you should choose products that are specifically designed with this problem in mind. wink

IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/28/2009 10:37 PM (GMT -6)   
Hi New Baby,

Re-gaining overall urinary function control after surgery is different for everyone.

General control can get better as you strengthen your pelvic floor muscles. I tried doing the Kegel exercises on my own based on the handout given my by my doctor with some success, but not enough after 12 months.

Finally, I obtained a referral to a trained physical therapist associated with a local hospital who uses bio-feedback to re-train the pelvic floor properly. The bio-feedback employs a sensor to accurately measure the activity and strength of your pelvic floor muscles. The bio-feedback can tell whether or not you're doing the Kegel exercise correctly and measures the progress you're making. The therapist knows from the electrical sensors how quickly to move on to the next exercise. The program takes several weeks, but it is well worth it for many people. My insurance paid for most of the cost.

After you regain basic control, there are about five drug therapies to help. One of these is named "Vesicare" and has helped many.

Please let me know if you have further questions.

Barry (a.k.a Idaho)
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


RFP
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 8/30/2009 11:23 AM (GMT -6)   

Barry, I am currently on a drug called "Cymbalta" which has helped with my stress incontenence.  I take it twice a day morning and at night.  I'm down to about 1 or 2 pads a day.  I'm back to working out and biking with some minor leakage but things seem to be improving.  What is "vesicare" and what are the other drugs you mention?  My urologist did not mention any of these.  I had to research the drug myself and my normal doctor said "try it".  I found the drug reading Dr Patrick Walsh's book "Surviving Prostrate Cancer"  Take Care and thanks for your reply.

RFP (Illinois)


Last PSA prior to biopsy- 5.9
Biopsy - 12/08
Gleason Score - 3+3=6
Staging - T1c
Age at biopsy - 66  good Health (Work of 3-5 times a week at Lifetime Fitness and Bike)
da Vinci RP surgery - 1/20/09 at Sherman Hospital in Elgin IL
Surgeon - Dr. Griffin
Hosp stay - 1 night
Catheter removed - 1/28/09
Post-Op blood test - 2/25/09  PSA 0.04
Scheduled weekly biofeedback sessions with Physical Therapist started 3/2/09
Electrical stimulation started 4/6/09


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 8/30/2009 9:59 PM (GMT -6)   
Hi RFP,

Vesicare is an urge incontinence drug.

You can find more information here: www.medscape.com/infosite/vesicare

I do not know the name of the other drugs, but I will find out when I visit my uro in September.

Barry
Da Vinci LRP July 31, 2007… 54 on surgery day
PSA 4.3 Gleason 3+3=6 T2a Confined to Prostate
6th PSA 06/09 still less than 0.1


RFP
Regular Member


Date Joined Mar 2009
Total Posts : 30
   Posted 8/31/2009 2:00 PM (GMT -6)   
Thanks for the info Barry. I have stress incontinence not urge but i will discuss Vesicare with my Doc. Appreciate any other drug info you learn about.
RFP
Last PSA prior to biopsy- 5.9
Biopsy - 12/08
Gleason Score - 3+3=6
Staging - T1c
Age at biopsy - 66  good Health (Work of 3-5 times a week at Lifetime Fitness and Bike)
da Vinci RP surgery - 1/20/09 at Sherman Hospital in Elgin IL
Surgeon - Dr. Griffin
Hosp stay - 1 night
Catheter removed - 1/28/09
Post-Op blood test - 2/25/09  PSA 0.04
Scheduled weekly biofeedback sessions with Physical Therapist started 3/2/09
Electrical stimulation started 4/6/09


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 8/31/2009 3:54 PM (GMT -6)   
Cymbalta is primarily prescribed as an antidepressant and there is some controversy as to whether it has any place as a primary drug of choice for treating stress incontinence. I hate to second guess your doctor, but perhaps you need another opinion.
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

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