Reason for my continued incontinence: "Stricture"

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Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 8/31/2007 3:44 PM (GMT -6)   
Well, today was not a good day. After no progress on the incontinence issue since my cath was taken out, I finally went back to see my local urologist today.

I had my surgery done at a university hospital an hour and a half from my home because my local uro did not do the laparoscopic. So I go to see him, and I urinate for him and he says my stream is weak. Would I like him to do the cystoscope to check it out? OK. So I get the camera tube up the penis and I get to watch it on TV. I didn't really understand what I was watching, but he explained to me that I have a urethral stricture below my bladder which is keeping my sphincter from completely closing in its relaxed state. That's why I am constantly dripping when I am standing up unless I am clenching the cheeks for all I'm worth.

Will it go away by itself, I ask. "NO". How to fix it? "It either has to be "stretched" or cut." The risk of stretching is that you stretch the sphincter too. The risk of cutting is that you make more scar tissue. Will he do it, I ask? "NO. Have your surgeon treat it."

While my uro tried to put the best face on it, his answers seemed to indicate to me that the outlook is not very positive and he would rather not be treating another doctors post surgical complications. He said I am looking at another several months of incontinence assuming I was treated successfully for the stricture. He did not want to guess on the likelihood of "fixing" it.

So, what I want to know, dear forum readers, is who among you have had strictures, what did you do about them, and how successful was the treatment in controlling your incontinence?

I must admit that I am having a hard time being positive about this latest development. Apparently, strictures are rare after surgery. I am almost out of sick leave, and there's no way that I can perform my job with my current level of incontinence.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing


Berb
Regular Member


Date Joined Mar 2007
Total Posts : 93
   Posted 8/31/2007 6:45 PM (GMT -6)   
I'm interested in Jefnef's comments here that a stricture is keeping the sphincter from completely closing in its relaxed state.

A recent udodynamic study concluded that I have "possible bladder neck stenosis". This was based upon an obstruction when attempting to insert the catheter, and also on my weak urine flow. I have suspected for some time that my lack of progress on regaining continence is related to the fact that urine came out of the drain tube following surgery rather than out of the catheter. Clearly there was a leak at the anastimosis, and it took several days for them to control it. I suspect this is the cause of scaring.

My urologist/surgeon says that this could not affect the operation of the sphincter because they are too far apart. I am sceptical about this conclusion, as something has to be causing me to be incontinent (8 pads a day) after nearly 8 months, and if not this, then what?

I am very interested in any responses to Jefnef's question.

Berb
59 years old
Da Vinci surgery Jan 10, 2007, nerves spared
Pre surgery PSA 8, Gleeson 3+4=7, T1C, 3 out of 12 biopsies had cancer
Post surgery pathology says no cancer outside prostate
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 anti biotics cleared up
Complication 3 - fungal growth on genitals (candida albicans) probably from antibiotics
PSA test 10 weeks after surgery - PSA undetectable


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 8/31/2007 9:18 PM (GMT -6)   

    Jefnef,  sorry to hear aobut yoru problems.  I know how the leaking can work on you.  Just check out my "journey" a few pages back.  You can see I'm one of the UN-Lucky few that have long term incontenance.  Just wondering.  What line of work are you in?  I am a welder in a Air Force repair depot.  I can manage with Depend Under guards for men.  But, I don't have to do alot of heavy lifting or crawling around on things to do my work.

    Try to hang in there.

    KW


    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 9/1/2007 4:43 AM (GMT -6)   
  Berb, KW, Jeffnef, Gene, and others here with extended incontinence,

  I admire your efforts and ability to help others on this topic.

Jeffnef,  Concerning going back to work fully incontinent:
I am a Produce manger in a large grocery store and "manage" 10 to 20 pallets of 10 to 60 pound boxes every day.  I went back to work at Week 4 fully incontinent as I worked on my feet 12+ hours a day around customers and co-workers that never knew anything except that I had "some kind of hernia surgery that I don't want to talk about" and stooped and lifted (light things at first) and remained fully incontinent through week 10 and more.

My main strategy was to hydrate (1/2 gallon+ liquid) after work before bedtime and then limit fluids throughout the day to minimize pad change.  Then, the first 4+ hours at work, I would change out my pad every two hours and then about every four hours as I ran lower on fluids.
My "pad" was actually two pads:  The men's brief liner that holds 8 ounces and then at 90 degrees, under the penis, I would wear a womens incontinence 12 ounce liner that was very easy to switch out.  If I remembered to switch the female liner out after two hours, I could leave the men's liner all day as it would not get wet.
If I got thirsty and drank a Sprite, I would soon change out the women's liner again....
To be honest, I would forget to change out the women's liner soon enough at least once a day as I dealt with the demands of business and people.  I carried a couple of both kinds of pads in my pockets.

My main advice is to use a barrier cream daily (e.g., petroleum jelly) and a fungicide ointment (I found generic Tinactin effective & cheap.) weekly.  Also, every night I would dust the entire area with baby powder (or fungicide Tinactin powder) and sleep nude on a disposable incontinence sheet/pad.

A comment about the powder and sleeping (or watching TV) nude:  The sensation of dryness was unbelievably comforting to me when I was totally incontinent - and for six+ weeks had no reason to believe it would not last forever.

While most of us only have an inkling of your battle, still, let us encourage you to be strong and like Berb, KW, and Gene - don't let it keep you from living the life you choose.
Please express the victories you have by smiling at your friends - especially if they have no clue that a lot of us are still "in diapers..." for the long-haul.

Sincerely,

CCedar
ICTHUS
2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 9/1/2007 10:04 AM (GMT -6)   
Berb, My physician's conclusion about my sphincter not closing when relaxed was based on what he observed through the scope. I too wondered how a scar near the place where my urethra was cut could effect the sphincter muscle, but apparently they are very close. He observed me contracting and relaxing the muscle and also apparently observed this "stricture".

I wish I knew more about these things. He explained to me that the anastomosis (hope I spelled that right) which is the place where the urethra is stitched together, will normally take time to heal, and scarring is typical. Like a scar from a cut on your hand, it may take months to completely disappear. What I didn't understand is why the stricture, which he explained is a type of scar, does not go away.

In any event, there's a variety of treatments that I have found on the internet this last day or so, and it seems most involve cutting or stretching the stricture, each with it's own attendant risks. I am not sure but it seems that neither of these two methods produce long lasting results.

There is a third treatment where they actually rebuild the urethra using tissue from elsewhere in the body, this is called urethroplasty, and apparently is very specialized and only a few really specialized surgeons do this. I am not even sure if they type of stricture I have would be a candidate for this type of treatment.

I'll talk to my surgeon next week and see what he has to say.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing
Diagnosed with "stricture" as the cause of incontinence


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 9/2/2007 6:51 PM (GMT -6)   

Jeffnet....

I think you are only #3 whom on the forum I have heard of having a stricture.  I am #1.  It is indeed the "pits".  I had my stricture dialated... stretched if you please.  I am approaching month # 7 for post-op radical open surgery.  Every time I think I may be getting better, I have a terrible setback.  I would like to blame my surgeon for a sloppy job, but I am not sure that is correct to do.  I may be just one of those guys who, regardless as to who cut on me, I would be incontinent.  We must do our very best in trying to gain continence and face any "music" when the time comes to do something else.  I get very frustrated until I read of someone else who is much worse off than I.  I just read one of those posts and I feel ashamed for whinning over peeing in my pad all the time.  At least I pee and at least I have a pad.  I am still praying that someday I can gain control.  I pray the same for you.

Gene


Age: 63
First biopsy 07/05;
Diagnosed: "Suspicious looking cells". Dr. says wait and watch.
Second biopsy: 12/27/06
Diagnosed cancer: 01/24/07
Gleason Grade: 3+3=6
Radical Open Nerve-sparing Prostatetomy: 02-14-07
Cancer confined to prostate
Pathology Stage of cancer: T2c
First Post-Op PSA on 04-18-07: 0.011
Bleeding problem at 6 weeks post surgery...No resolution despite several trips to surgeon, antibiotic treatment.
05/31/07: Cystoscope reveals "stone", due to "Stricture" (narrowing of uretha at prostate removal site).
06/12/07: Procedure to remove stone & dilate uretha at stricture: Successful procedure, but is most likely a temporary fix, and incontinence continues.
8/16/07: Start bleeding again in urine.  Get to see a new urologist same day.  He thinks stricture is back, but send home with Cipro.
8/20/07: Go back to dr. for cystoscope.  "No sign of stricture"!  Wonderful news!
8/31/07: Back to new urologist for regular check up & received 2nd post-op Psa.  It was 0.05 (non-deteactable).  PTL!
8/31/07:  First Bio Feedback session.  The little lady is very positive that I can gain control.  That's what I want more than her.  New urologist is not very sold on effectiveness of Kegals???  
 
 
 


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 9/3/2007 8:48 PM (GMT -6)   
Hi Gene,

Yes, it sounds like we stricture sufferers are a small minority. For that reason, I am not eager to have this treated. The small incidence of strictures leads me to believe that many doctors don't have much experience treating them. I'm trying to do my due diligence before deciding what to do about it. I'm only about three months behind you on the surgery date, but I took a little bit longer to find out that I had this problem. I kept being told "don't worry, it takes time." Well, my local uro doc says no amount of time is going to change my stricture caused incontinence.

thanks for providing some perspective. I'll report back as I learn more.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing
Diagnosed with "stricture" as the cause of incontinence 8/30/07


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 9/3/2007 8:49 PM (GMT -6)   
Oh, one more thing, Gene. I asked my local uro doc about the bio feedback, and he said that I had very strong sphincter muscles, and he didn't think the biofeedback would help me much.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing
Diagnosed with "stricture" as the cause of incontinence 8/30/07


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 9/3/2007 10:33 PM (GMT -6)   
Jefnef, I was lucky after my robotic surgery and regained almost 100% control within a month. I'm now at three months and have only the occasional leak. However, I also have developed a stricture from the scar tissue that resulted at the point where the urethra was sutured to the "foot" of the bladder. My stream is pretty weak and it takes a while and a bit of effort to make sure I've totally emptied my bladder. I went back to my urologist, who performed a cystoscopy and confirmed the stricture. He recommended a procedure to dilate the area and open it up.. I said, "Sure" and set the date. The more I researched, however, the more I became concerned about incontinence. I found out that because the stricture is above the location of the sphincter, they have to dilate the sphincter as well. I checked back with him, and he admitted that I should expect "several weeks to a few months" of incontinence. He didn't tell me that when I first saw him, other than to remark that I could experience a "temporary setback" as to incontinence. To be quite candid, I was pretty p.o.'d when my own research indicated, and he confirmed, that it was more than a mere "setback." Sometimes I think these guys think that another "cut" is the only answer, without really being totally candid about the potential side effects. Anyway, I've decided to live with the weak stream and avoid the potential for a serious incontinence issue. I know this doesn't address your issue, and I wish you weren't experiencing the problems you are. But I would be very hesitant to undergo a dilation procedure -- it might just make your problem worse. Good luck and let us know how you're doing.

puget
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 9/4/2007 2:44 PM (GMT -6)   

Jefnet & Puget,

Puget, I think you are right that some of these surgeons conveniently forget to tell you "the rest of the story".  That was my experience with my former uro/surgeon.  It was after the fact of my dialation that I discovered on my own the increased incontinence and also the fact that strictures often come back after they are removed.  But, Puget, will the scar tissue contineue to grow and do you suppose it will have to be removed?  Couldn't it completely block your urine flow?  I would like to know the answer to this question.  So what the stream is slowed... if it does not stop completely, isn't a slow stream better than a constant leak?  In my case, something had to be done with my stricture.  It suffered irritation and subsequent bleeding... so I didn't have a choice, ... I think.

Gene <><


Age: 63
First biopsy 07/05;
Diagnosed: "Suspicious looking cells". Dr. says wait and watch.
Second biopsy: 12/27/06
Diagnosed cancer: 01/24/07
Gleason Grade: 3+3=6
Radical Open Nerve-sparing Prostatetomy: 02-14-07
Cancer confined to prostate
Pathology Stage of cancer: T2c
First Post-Op PSA on 04-18-07: 0.011
Bleeding problem at 6 weeks post surgery...No resolution despite several trips to surgeon, antibiotic treatment.
05/31/07: Cystoscope reveals "stone", due to "Stricture" (narrowing of uretha at prostate removal site).
06/12/07: Procedure to remove stone & dilate uretha at stricture: Successful procedure, but is most likely a temporary fix, and incontinence continues.
8/16/07: Start bleeding again in urine.  Get to see a new urologist same day.  He thinks stricture is back, but send home with Cipro.
8/20/07: Go back to dr. for cystoscope.  "No sign of stricture"!  Wonderful news!
8/31/07: Back to new urologist for regular check up & received 2nd post-op Psa.  It was 0.05 (non-deteactable).  PTL!
8/31/07:  First Bio Feedback session.  The little lady is very positive that I can gain control.  That's what I want more than her.  New urologist is not very sold on effectiveness of Kegals???  
 
 
 


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 9/4/2007 4:25 PM (GMT -6)   
Hey, Gene. I don't know the answer to your question for sure. One source I checked said that strictures were "rare" (4-6%) and seldom recurred. as to the scar tissue, my uro did say the scar tissue could increase over time, but then again maybe it wouldn't. So far it hasn't gotten worse. I see him again on the 13th and am going to ask more questions.
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 10/2/2007 5:44 PM (GMT -6)   
Hi Gene and Puget,

Sorry for the long delay in posting. I visited another doc today for another opinion. He seemed to think that I should try dilation and see what happens. He admitted there was a risk of making the incontinence worse, but there was an equal chance of the dilation improving my incontinence. I asked him if there was any way to evaluate the risk, and he said, "not really."

He said that even with a cystoscope there are so many anatomical variables that it is almost impossible to know what is really going on or causing the incontinence. He said that if it were him he would try dilation, if that didn't work, then find a doctor who specialized in strictures and possibly have surgery to correct it. Worse case scenario he said, would be to implant an artificial sphincter.

If I had a weak stream, but was holding my water, I would be happy about it. As it is, I'm constantly dripping and I don't feel that doing nothing is an option.

I have an appointment with my surgeon on Oct. 17th. He's going to scope me and discuss with me whether or not dilation is an appropriate course of action at that time. I'll report back.

This is not fun. I feel like I'm just along for the ride.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing
Diagnosed with "stricture" as the cause of incontinence 8/30/07


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 10/2/2007 6:59 PM (GMT -6)   
Jef, Sorry to hear your dealing with this too. I am almost 1 year out and still using about 6 pads a day. Just wanted to let you know you are not alone. Will be watching to see how things go.

Good Luck, KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.  Worked for a couple of days then back to leaking.
    April 17th (Six Months Post Op) 2nd Collagen Injection to control excessive leaking.  Leaking started back next day at work!
    May 14th Second Opinion about my leaking and Options at OU Medical Center.  After reviewing my records the Dr. feels I will probably need some surgical intervention to stop my leaking.  But did agree to try Bio-Feedback and work hard on the Kegeal's first!
    May 30th Follow up with my Dr. and 3rd Post Op PSA 0.00 agian!!!
    June 1st Start Bio-Feedback to try to control my leaking.
   


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/2/2007 7:04 PM (GMT -6)   

Hey ~ Jefner...

I can hear the deep sigh in your message.  And I'm glad to see you posting... Stay closer okay!!!   I have some thoughts going through my mind and I'll get them down on paper in the next few days.  I have some questions... that may have already been asked and answered. 

I'll back track to some of the postings by you,

KW, Gene6163,  Puget,  Berb, and Hagrid... before I post again.

We really need to keep all of "THESE POSTINGS" together.  I've been working on it and will check with you guys before I post it.

Keeping you "all" extra close during this time.  In Friendship ~ Lee & Buddy


Hagrid
Regular Member


Date Joined Sep 2007
Total Posts : 60
   Posted 10/2/2007 7:45 PM (GMT -6)   
I've been reading as many of the old posts I can since joining recently. LOTS of talk of incontinence, but I've seen virtually no discussion of an artificial urinary sphincter, which was my decision after several years of incontinence and more than my share of accidents, embarrassments, and hassles.

Since getting my AUS, no more accidents, and virtually all of the restrictions and fears have disappeared. It has made a TREMENDOUS difference in my every day life. Coming up on 4 years with my "device" now.

I would like to hear from other men who have gone the same route, and be glad to discuss my choice with those tired of dealing with incontinence.
Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Biopsy -positive, both nodes 03/1999
Bone Scan and CAT scan negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 6/1999
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007
 


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 10/2/2007 9:28 PM (GMT -6)   
Jefnef, glad you checked back with us. I'm sorry you're still leaking. If I faced that, I might well make the same decision you are considering and your doctor is recommending. It could get worse, but right now it's not getting better. I dunno. It's a tough choice. Since you started your thread, Grover has also shared his experience. His post is just a few lines below yours. We are a very small minority, and it's good to make contact with guys who are facing the same problems. Stay in touch. My thoughts are with you -- and Grover, kw and Gene and all those who face continuing problems with incontinence and/or slow stream. I try to remember the good stuff -- no more cancer!
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07 = <.01 (Hooray!!)


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 10/3/2007 10:25 AM (GMT -6)   
Hi everyone and thank you for the encouragement. I am trying to keep all this in perspective. As many point out, here and in my personal life, the important thing is that I am cancer free.

The toughest part is not knowing what to do, how it will all work out, and what my long term stable state will be. One day at a time. I'll try to keep you all informed about my further journey.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing
Diagnosed with "stricture" as the cause of incontinence 8/30/07


Biff
New Member


Date Joined Apr 2006
Total Posts : 13
   Posted 10/3/2007 2:56 PM (GMT -6)   
Hagrid, I have been a member of this forum since May of 2006. I am at 16 months now and am still having severe
incontinence problems. I had radical prostate surgery with Divinci Robotics in Memphis, Tn. and my life has been down hill ever since. I also have E.D. problems. I say problems, as there is nothing there. I have tried Viagra, Cialis, and all the other meds out there with no success,as they had to take my right nerves, due to the cancer. I am scheduled November 19th to have the sphincter 800 put in. Also, having the penile pump put in at the same time. I have been trying to find someone who has had these put in to get their response on success. I have not had much luck on finding anyone. You say your implant works for you. Any problems? How long did it take for you to get back on your feet after surgery? Any word would be of great help. Anyone else out there know anyone who has had either of these would be great!!
Thanks, Biff

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/3/2007 6:38 PM (GMT -6)   
Hey Guys,

Re: Artificial Sphincter

I have a phone # for a gentleman "Jim" who's more than happy for you to call him directly.  I had hoped he would come on the forum but prefers to talk over the landline!
Click on bluebird  send e-mail with subject line: Request Jim's phone # and I will be happy to send it to you.
 
My thoughts are going haywire with my concern over these issues... and it truly helps to see "lurkers" becoming new members!!!  Remember ~ we need as much information as possible so ~ please take the time to share with us.
 
Hugs to each and every one of you!!!! 
In Friendship ~ Lee & Buddy
 
 
 

pongster44
New Member


Date Joined Oct 2007
Total Posts : 1
   Posted 10/4/2007 10:59 AM (GMT -6)   
Hi,
This is my first time in a chat room since my radical prostatectomy (robotics) on 8/15/07 and it's 7 weeks today and I'm still trying to figure out when continence will return. I have constant leakage during the day and every time I get up from sitting I need to race to the bathroom. The nights are getting better even though I'm up 8 - 10 times during the night but days are not improving. I'm doing the kegals and all the things the urologist tells me to do...Does anyone have  a magic formula that may work? The surgery went well and my PSA was 9.9 and the Gleeson was 3+4 = 7. I have friends that have had the same thing and they were 99% continient by 8 - 10 weeks. Maybe I need to be a little more patient.

Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 10/4/2007 12:55 PM (GMT -6)   

If you hang around this forum for very long, it will dawan upon you that patience is a must.  On this forum are those who were dry as soon as the catheter came out, those who were dry in 3, 6, 12 weeks... Some even longer, like me and a few others on here.  You will most likely begin to sense some control very soon now.  But if it takes a little long, don't give up.  At nearly 8 months, I'm not giving up.

Gene


Age: 63
07/05 - Biopsy: Suspicious looking cells. 
12/27/06 - Biopsy
1/24/07 - Dignosed cancer: Gleasn Grade: 3+3=6
02-14-07 Radical Open Nerve-sparing surgery
Pathology Stage of cancer: T2c
4-18-07: First Post-Op psa = 0.011
05/31/07: Cystoscope reveals "Stricture"
06/12/07: Procedure to remove stone & dilate uretha at stricture: Successful procedure.
8/16/07: Start bleeding again in urine.  Get to see a new urologist same day.
8/20/07: Go back to dr. for cystoscope.  "No sign of stricture"!  Wonderful news! Still leaking.
8/31/07: Back to new urologist for regular check up & received 2nd post-op Psa.  It was 0.05
8/31/07:  First Bio Feedback session.
9/19/07: Finished 4 Bio Feedback sessions.  No imporovement with leaking. 
9/26/07 - Started injections   
 
 
 


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 10/17/2007 2:11 PM (GMT -6)   
Hello all.
Today I had an appointment with my surgeon to investigate my continence situation. He did a cystoscope and confirmed the findings of my regular urologist that I had a stricture that was hindering the normal function of my sphincter. He inserted several progressively larger dilation tools, I think these were inflatable. Finally he used a metal tool to break the stiffer part of the stricture. When this was done, he viewed the urethra and bladder neck again, and I could observe it as well on the video monitor, not that it revealed very much to me.

Afterwards we had a consult, and he explained that my stricture was not a bad one, but bad enough that I probably will not regain complete continence without more treatments. Since I am over 5 months post surgery, he recommended not waiting for it to get better on its own, but to aggressively pursue a course of treatment that might improve the situation.

He said I have two choices: Several more progressive dilation treatments similar to what I experienced today, or a procedure called a "bladder neck incision, where he goes in with a scope with a cutting tool on the end of it and makes some small incisions to release the stricture.

There are risks involved with both procedures.

With the Bladder Neck Incision, there is a higher risk of bleeding, which could require a transfusion. Also the procedure will be done under a general anesthetic, although as an outpatient, so the usual risks associated with a general would apply. And of course, the risk of infection. It's obviously a more aggressive and complex procedure than simply stretching the stricture.

The dilation procedure is less invasive, but may take 2, 3, or more treatments to produce results.

The doctor feels that the BNI is the way to go. He says it has a higher probability of being succesful, and of course, would most likely not require a follow up treatment-- IF IT WORKS. And there are no guarantees, but he said in his experience, he estimates that 90% of patients who have this treatment do not require any other treatment and fully recover continence.

Well, is it just a coincidence that I was told that 90% of patients that have a prostatectomy like the one I had experience no complications due to the surgery????

Maybe I am being too skeptical. I have a decision to make. I would appreciate any input that you, my fellow forum members might be able to provide.

Thank you.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing
Diagnosed with "stricture" as the cause of incontinence 8/30/07


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 10/17/2007 3:23 PM (GMT -6)   

Jefnet,

Wow.  Although I've had the stricture dialation, I've not had the other.  Moreover, my dialtation was a one-time thing and it worked, as far as removing the stricture... or so I am told by two different urologists.  This would be a hard call but we've gota to what we've gotta do to regain continence. 

At this point I'm certainly not one to advise.  My frame of mind in all of this is not good now.  Still, what choice do we have but to go with our doctor's recommendation after, of course, learning all we can learn about the procedure on our own. 

Gene


Age: 63
07/05 - Biopsy: Suspicious looking cells. 
12/27/06 - Biopsy
1/24/07 - Dignosed cancer: Gleasn Grade: 3+3=6
02-14-07 Radical Open Nerve-sparing surgery
Pathology Stage of cancer: T2c
4-18-07: First Post-Op psa = 0.011
05/31/07: Cystoscope reveals "Stricture"
06/12/07: Procedure to remove stone & dilate uretha at stricture: Successful procedure.
8/16/07: Start bleeding again in urine.  Get to see a new urologist same day.
8/20/07: Go back to dr. for cystoscope.  "No sign of stricture"!  Wonderful news! Still leaking.
8/31/07: Back to new urologist for regular check up & received 2nd post-op Psa.  It was 0.05
8/31/07:  First Bio Feedback session.
9/19/07: Finished 4 Bio Feedback sessions.  No imporovement with leaking. 
9/26/07 - Started injections   
 
 
 


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 10/25/2007 4:42 AM (GMT -6)   
One week post-dilation: My continence has not improved, but my stream is better.

Well I have made the decision to have the "bladder neck incision" done. I'll go in on October 30. I'm hoping that the doc's confidence is justified. I'm not excited about having a catheter again, doc said 5-7 days. But if it works, it will be worth it.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing
Diagnosed with "stricture" as the cause of incontinence 8/30/07
Sept 2007 3-5 pads/day
Stricture treated by progressive dilation on 10/17/2007
No change in continence, stream was improved
Bladder neck incision scheduled for Oct 30


Jefnef
Regular Member


Date Joined May 2007
Total Posts : 42
   Posted 11/2/2007 3:56 PM (GMT -6)   
I had the bladder neck incision done on Tuesday.

Surprisingly, the recovery from this procedure has been more painful than the recovery from my prostatectomy. My groin area is very sore. I am taking oxycodone every 4-5 hours and it's effective, but when it wears off... ouch!!!!
Also, I am experiencing a fair amount of leakage around my catheter tube, which didn't happen as much after the prostatectomy. I did leak after the prostatectomy, but it took several days to start leaking and volume was less as I recall.

anyway, I am supposed to get the cath out on Tuesday, and the doc said I will notice the improvement in continence right away! I hope he's right. It will be great to ditch the pads and go back to boxer shorts. I'll let you all know how it turns out.
Abnormal DRE 12/06
Diagnosed 1/23/07
Biopsy 6 cores 1 positive
T2b Gleason 3+3 PSA 1.4
Laparoscopic Prostatectomy 5/11/07
pathology: less than 5% tumor by volume
no cancer in margins or vesicles
cath out on 5/22
PSA test Aug. 2007= less than zero
Continence: none while standing
Diagnosed with "stricture" as the cause of incontinence 8/30/07
Sept 2007 3-5 pads/day
Stricture treated by progressive dilation on 10/17/2007
No change in continence, stream was improved
Bladder neck incision scheduled for Oct 30

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