Newbe with incontinence problems

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Luckyjock
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/26/2009 3:20 PM (GMT -6)   

My introduction,

My name is Jim. I am 64 years old, and retired from the armed forces.

In 2003, my wife of 40 years passed away after a horrific 2 year battle with Mesothelioma, the cancer caused by exposure to asbestos.

In June, 2006, I remarried, to a cancer widow, a wonderful lady I want to spend the rest of my life with. Unfortunately, our honeymoon stage was cut very short and our relationship has gone through a rollercoaster of emotion and depression, mostly mine.

In August 2006, only 2 months after marriage, I was diagnosed with cancer. PSA - 7.5, physical examination, and 8 point biopsy, all positive. (Sorry, I don’t know all the technical terms.) Prior to the diagnoses I was in good physical condition with no health problems. I had no symptoms of prostate problems what-so-ever.

I elected radical prostatectomy. The procedure was successfully performed in November 2007.

I had a series of post op complications, the worst of which was urinary tract infection. The infections continued, occurring every couple of months, for over 2 years. I finally got in for cystoscopy about 2 months ago. I had excessive scar tissue, so my urinary tract was dilated. I have not had infection since.

I was very fortunate that I quickly regained the ability to get an full erection, (some drug assistance here), orgasms and meaningful sex. However, continuing incontinence has been an embarrassing and demeaning plague that has taken its’ toll on our love making. It remains a very aggravating, embarrassing, and demeaning problem. I only have control when I am directly concentrating on it. If I lose concentration, like during sex, or many other circumstances, I lose control.

The urologist suggested that it was very unlikely that my incontinence problem would further improve at this stage. I had done keegles until it made my sick and sore. He suggested treatment with an anticholinergic, or an artificial urinary sphincter (AUS).

I am about to start a regime of Detrol’ LA, an anticholinergic. However, my research describes it’s use is for Over Active Bladder (OAB). I don’t believe my incontinence is caused by OAB.

Does anyone have knowledge of anticholinergics.

Research into the AUS frightens me. I would like to hear the pros and cons from those of you who have first hand experience, (No pun intended).

When I was diagnosed, I was shocked to learn that there were many men I knew who had dealt with prostate cancer. Reaching out to those who really know the issues must be satisfying and more effective than the clinical advice and support from the professionals who have never been here.

I am here and looking forward to discussing prostate issues with you.

Sincerely

Jim


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 3/26/2009 4:18 PM (GMT -6)   
Welcome to HealingWell Jim. There are several folks here that have had the AUS implant and others that are considering the implant as well. Stay tuned and they will be along shortly. I just saw the post and wanted to say Hello and to welcome you here. You will find many caring folks here and one of the best forums you will find.

Take care and once again Welcome
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06


Luckyjock
New Member


Date Joined Mar 2009
Total Posts : 2
   Posted 3/26/2009 4:54 PM (GMT -6)   
Thanks Les,
I was very active in a forum similar to this one as a caregiver when my first wife was sick. I always found the discussions comforting and supportive.
I don't understand the terminology but it looks like you've fought quite a battle. about 6 months post op? How are you doing?

Jim

LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 3/26/2009 4:59 PM (GMT -6)   
Thanks Jim...my 6 month test will be in a couple of weeks. Gonna be interesting I think. Otherwise I am doing fine. I still wear a pad during the day and ED is still an issue. But I am early in the recovery, so I remain optimistic.
You are beating back cancer, so hold your head up with dignity
 
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base) - Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (4+3) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA 5 week Oct 2008 <.05
       3 month Jan 2009 .06


Berb
Regular Member


Date Joined Mar 2007
Total Posts : 93
   Posted 3/27/2009 3:57 PM (GMT -6)   
Hi Jim,
 
I had an AUS fitted 9 months ago.  Like you, I keegled until I went mad and made no difference whatever.  Tried the clamps, used condom catheters for a while, and eventually had the AUS installed 18 months after my PCA operation.  At that point I was using 8 pads a day an no improvement.
 
The AUS is GREAT!.  Operation as hassle free, 3 days in hospital, no foley catheter, 6 weeks with condom catheter afterwards while it all healed (or pads if you prefer), and then the deviced is activated.  I wear a small panty liner to catch drips.  These occur mostly because I don't follow the instructions to not put the penis away for around 45-60 seconds after urinating as it takes this time for the valve to shut firmly after urinating.  I also get some drips if I sneeze, or bend awkwardly.  I have an active life, including running marathons.
 
I strongly urge you to consider it positively.
 
Berb
59 when diagnosed, now 60 years old
Da Vinci surgery Jan 10, 2007, nerves spared, no cancer detected outside prostate
Pre surgery PSA 8, Gleeson 3+4=7, T1C, 3 out of 12 biopsies had cancer
Complication 1: urine favoured drain tube over catheter, extra time in hospital, catheter in for 2 weeks
Complication 2 - urinary tract infection - Citrobacter (hospital bug), 6 weeks antibiotics cleared up
Complication 3 - fungal growth on genitals (candida albicans) probably from antibiotics
Aug'07 Urodynamic study for continuing incontinence 8 pads per day; diagnosed bladder neck stenosis
Oct'07 CT scan indicated nothing abnormal; cystoscopy showed narrowing at anastimosis - dialated
Dec'07 averaging 9 pads a day, started acupuncture (no benefit after 10 treatments)
Jun'08 AUS fitted
Aug'08 AUS activated - highly effective
Post surgery PSA tests: all undetectable


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 3/29/2009 2:29 PM (GMT -6)   

Jim,

Do not be afraid of the AUS.  Several of us on this forum have had it imlanted.  You just have to make peace with yourself and answer the question: "Am I willing to leak the rest of my life?"  If the answer is "NO", you've taken the first step.  I had mine implanted  8 months ago and the results have been wonderful.  How dry I am!  There are a few... very few dribbles each day, but nothing, absolutely nothing to be compared to "incontinence."

Gene214


PC diagnosed 12-06 @ age 63
Radical open removal 2-14-07, Gleason 3+3=6
Removal of stricture 6-07, incontinence continues
Scheduled for AUS & IPP 05-08
Surgeon cancelled one day pre-surgery, due to cardiac concerns
Nuclear stress 5/13/08
3 stents 5/27
AUS, IPP implanted 07-16-08
AUS, IPP was activated on 08-18-08.  They both work!
10-20-08 went back to surgeon for a follow-up.  Both devices are working very good and surgeon was very pleased that I am very pleased.
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 3/29/2009 4:32 PM (GMT -6)   
Greetings, Jim.  Welcome to this forum. I can't give you any input on the AUS although there are several guys here who have had it and seem to be very pleased with it.  I wanted to give you a little input on the Detrol LA.  My doc gave it to me because I was having to get up several times a night.  I told him that I had hoped that not having a prostate would cut down on the number of trips to the bathroom at night.  It took awhile, but it finally seems to be working.  I rarely get up more than once and will on occasion go the whole night without having to get up.  I don't know what effect it might have on general incontinence issues, but if he thinks it might be worth a try, I'd give it a try.  David

Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 3/29/2009 7:44 PM (GMT -6)   
Dear Jim, Have the AUS.....It is a great device.....My husband had it implanted, and although not perfect like Genes, Berbs and KWs, it is really SO MUCH BETTER......Go to a good facility....and have it done. it is a no brainer.....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
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 3/29/2009 7:50 PM (GMT -6)   

    Jim,  With the problems you described I would look into the AUS.  It has changed my "post op" life.  I fought the leaking for two years.  I know there can be problems with any surgery and device but if you find a Doctor that does the AUS on a almost daily basis I'm sure you will be fine.  I will not say it is perfect.  I still use a light women's liner to catch a few drips and dribbles each day.  In the evenings around the house I do not need a liner at all.  There is no leaking during intercourse either.

    If you ever wish to talk please contact me at the e-mail address on the HW profile. 

    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
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.
    ED workable and usable with Viagra.
    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.
    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.
    March 27th, 2008 - Sling not working, Little or no improvement.
    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.
    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.
    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).
    July 30, PSA 0.00.
    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey
    Oct. 6th, 2008 - AUS Activation by Dr. Morey.  Working Great, only light drips and dribbles.
    Jan, 31st, 2009 - PSA 0.00  Next test in July, 2009  


leaky
New Member


Date Joined Mar 2008
Total Posts : 15
   Posted 4/6/2009 8:51 PM (GMT -6)   
Hi Jim,
My experience with incontinence extends over 4 + years. If I were doing it again I would skip the kegels, the physical therapy, electrical stimulation, drugs, male sling and have the AUS installed. Even though the AUS was not successful for me, I expect the revision to change that. The collar was replaced and relocated and I almost asked the doctor to replace stiches with a zipper.

You just have to keep trying to get improvement.

Best,
leaky
70 when diagnosed in 10/2004, open surgery 12/2004, margins clear, pre surgery PSA 6.4, 3+4=7, cancer from apex to base left side, 30 gm prostate, right nerves spared, seminal vesicles & lymph nodes (6) removed.

ED & incontinence problems since surgery, life changing & indescribable unless you have experienced it.
Also have edema in both feet and legs, worse in right leg.
Wear thigh high compression stockings and sleep with legs elevated.

Advance male sling 03/2008, AUS and IPP scheduled 10/2008. All work done at UT Southwestern in Dallas.

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