I Know Why I'm Still Incontinent @ 4 months...

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Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 6/9/2007 11:34 AM (GMT -7)   
I have been away from internet for a couple of weeks.  I have had a terrible problem with incontinence (now 4 months post open surgery). 
 
For those who remember me, my last info was that I was to see surgeon May 31.  I saw him and he finally... finally did a systoscope (sp?) and immediately saw what I had already suspected... a "stricture".  Except he called it a "sone", which caused me to be confused.  I had to call him back into the room for him to give me a more detailed explanation. 
 
Anyway, I am scheduled this week for the procedure to remove the stricture, either by sounding it or by cutting it.  What makes me so upset is that I had been communicating with him and even in to see him about my bleeding problem and all he did was give antiboitics.  Now, at 4 months post surgery, I am thinking the only way he can remove it is by cutting, which may damage my sphincter, according to Dr. Peter Scardino in his book.  Dr. Scardino states that early strictures can usually be sounded out but I have my doubts about mine since I've been having this problem for weeks and months now. 
 
Anyway, this coming Tuesday I will enter for what I hope will be day surgery and he will do this procedure.
 
Have any of you had to have this "rotor rooter" type surgery?  Are there any encouraging words you can share?  I could sure use them.
 
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
 
 
 


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 6/9/2007 11:48 AM (GMT -7)   
Gene, we don't have experience with this proceedure, but surely want to wish you luck. We'll be rooting for you and awaiting your post to say how it went. {{{{HUGS}}}}}
:o) Linda & Bob
Bob (61) - Laproscopic Prostate Removal Sept 27, 2006.
2 of 12 malignant biopsy samples - gleason 3 + 3 = 6.
 
Pathology - cancer completely contained, even a second more aggressive, previously undetected cancer)
PSA UNDETECTABLE Nov 2006, Feb and May,2007.

Bob also has two secondary conditions -- Polycythemia (elevated red & white cells & platelets) and . . Myelofibrosis) -- If anyone has experience with or information on these, please email us.


spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 6/9/2007 5:33 PM (GMT -7)   
Hello Gene,

I've heard of the "Rotor Rooter" procedure; my uncle had it many years ago for a urinary blockage. Now my dad is faced with the same problem; only today there is a high tech laser treatment called "GreenLight", or the PVP procedure. You might ask you urologist about it. Good luck.

Glen


Diagnosed at age 60
PSA went from 2.2 to 3.8 in 14 months
2 of 14 cores positive at 10%
Gleason 6(3+3), negative DRE, neg. boundaries
DaVinci surgery on 02/23/06
 


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 6/9/2007 6:48 PM (GMT -7)   

Above, I said the surgeon called my problem a "sone".  I shold had said he called it a "stone".  Anyway, it is not like a kidney stone, it is scarr tissue preventing proper urine flow. 

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
 
 
 


Bob116
New Member


Date Joined Dec 2006
Total Posts : 15
   Posted 6/10/2007 4:46 PM (GMT -7)   
Gene
 
My father had Brachytherapy close to ten years ago and over time has developed a stricture which is too large to do anything about. Had he realized the symtoms earlier it might have been a different story.
The key to anything in the medical field these days is early detection and it sounds as if you're right on it.
 
Best of Luck
Bob
Diagnosed 12/14/06
Age: 54
Gleason 6
PCA - Positive
PSA 5.3
Biopsy 3 of 12 positive
T1C
Right Lat Mid - Gleason 3 + 3 = 6 - 4% of specimen
Right Lat Base - Gleason 3 + 3 = 6 - 5% of specimen
Left Base - Gleason 3+ 3 = 6 - 5% of specimen
RRP 2/20/2007
Back to work - 4/9/2007
PSA 5/22/07 Undetectable (less than 0.1)
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/11/2007 6:13 AM (GMT -7)   

Hi Gene,

 

We are surprised that we haven’t had more people with this particular issue.  Thank you for sharing this stepping-stone in your path that many have not had to deal with.   After reading the information in our book listed below… and having been told by our urologist to be on the look out for this.  At the time… we were told… we were not alarmed by what would have to take place ~if this should happen.

 

Our thoughts are still the same… 

 

Head in on Tuesday and get this taken care of.  Yes ~ it would have been nice to have found out earlier… but maybe it was best to let as much healing take place before inserting anything into the urethra…  You know now… and you can move forward to getting this corrected and move closer to the goal of urinary continence…

 

Our thoughts and prayers are with you.

In Friendship ~ Lee & Buddy

 

P.S. It would be so helpful for others if you add bladder neck contracture (Scarring) in your title!!

 

Added for future readers!!!!

Excerpt from  “Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer”…

                                         (Give Yourself a Second Opinion) 2001

Patrick C. Walsh, M.D.

Professor of Urology, The Johns Hopkins Medical Institutions and

Janet Farrar Worthington

 

Bladder neck contracture, or constriction of the bladder neck:  this is scar tissue that forms where the bladder neck is sewn to the urethra, and it has been reported in between 1 and 12 percent of men after surgery.  Its symptoms are usually manifested by persistent incontinence, and a very slow or dribbling urinary stream when –this is the tip-off—the bladder is full.  Remember, incontinence immediately after surgery is a very common problem.  In the early days after surgery, many men who are having incontinence also worry about having a slow urinary stream.  But it’s hard to achieve a good stream if there’s not much in the bladder—and it’s impossible to store up urine in the bladder if it keeps leaking out.  Bladder neck contracture is different; the bladder is full, but the best you can manage is a dribble, because the scar tissue is blocking the flow, like a stuck washer in a faucet.

            If you are having prolonged incontinence, you should be evaluated with cystometry, a test that measures bladder progress and function by passing a small catheter through the urethra into the bladder.  Changes in pressure are monitored as the bladder fills with water.  If scar tissue is causing the trouble, it can be reopened in a simple outpatient procedure as a urologist, using a cystoscope (a tiny tube inserted through the tip of the anesthetized penis, through the urethra and into the bladder), makes a few tiny cuts to relax the tight scar tissue.

            To keep the area open, your urologist may recommend that you pass a small catheter through the urethra every day for a month or so after the procedure.  This way, the scar tissue won’t re-form, and the normal lining of the bladder and urethra will cover the opening as it’s supposed to.  If the scar tissue is particularly stubborn, your doctor may inject a powerful steroid called triamcinolone into the area of the contracture; this can be effective in preventing the scar tissue from returning.


mama bluebird - Lee & Buddy… from North Carolina

J  We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 6/11/2007 10:44 AM (GMT -7)   

I appreciate these responses.  Bluebird, thank you, too... very much. I have Dr. Scardeno's book, but not Dr. Walse's.  Some of Dr. Walse's explanatin fits me but some of it does not.  For example, I leak all the time, not just when my bladder is full.  But his explanation of the treatment is much more reassuring than what I read in Dr. Scardino's book.  The tiny cuts certainly sound better than the picture I had in my mind.  Anyway, tomorrow I shall have this procedure done.  It will be outpatient so hopefully I'll be home tomorrow night.

I will keep everyone posted.  I too am surprised that more men have not had this experience.  I feel somewhat "piced on."  Oh well. 

After this procedure I expect I will be through with this urologist/surgeon since I am moving to a different location in a different state.   Therefore, I do need advice on how to make contact with a new urologist:  On my own on the telephone or do I need a recommendation from my present urologist.

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
 
 
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 6/11/2007 1:43 PM (GMT -7)   

Hi ~ Gene,

 

You are so right!!!  yeah    Each book is the same but different… Just like our journeys!!!  Being able to pull what fits our needs is important.  That’s one of the reasons we started the thread:  BOOKS... Recommended by Forum Members  Every time someone mentioned a book I kept a listing of it.  After seeing more than 5 ~ I thought a thread would be good. 

 

I am so thankful you responded the way you did to the excerpt that I sent.   Thank you for letting us know that it helped you!  I personally find the wording a little calmer…in Dr. Walsh’s book but he gives you the full details…. Which is what we need.  In Dr. Scardino’s book ~ it has all the latest info on radiation, therapy, and laproscopic details.  A lot has happened in just 5 years since Dr. Walsh’s book was published. 

Looking back at your journey…. You have truly traveled a path with a few extra stones thrown in.  The forum has grown tremendously and I see where I’ve missed a few of your threads…  Would you mind if I link your threads to your other postings?  It will truly help others that follow in our path.

In reference to finding a new urologist… make sure you have all the paper work filled out that is required when having your “records” transferred to another doctor.  It will be easier to do before you leave town.  They may say wait and complete the form from the new doctor….requesting records.  Ask them (your current doctor) what the wait time is??? In sending.  I requested my personal records 2 weeks ago and still don’t have them…. So ~ find out!!! This will help to relieve any unexpected “stress”…. 

Where will you be moving? This can help us to help you!!!  In your search for a new urologist!  Take care for now.

Here’s a special Hug to take you through your procedure tomorrow.

 Remember… you’ll need to take a little extra time now to heal… so plan for it… okay!!!   tongue ~~*~~*~~*~~*~~~)*&^%  Group Hug %^&*(~~~*~~*~~*~~*~~

 

From the 3 of us...

Lee, Buddy, & Murphy


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 6/11/2007 8:42 PM (GMT -7)   

Bluebirds,

My move will take me back to Dallas.  I was there many, many years ago.  Perhaps some reading this post will have recommendations.  Of course my insurance will prescribe which group(s) I can use. Remember the days when you could choose your own physician?  Any way, I am hoping to get in with some of the Baylor doctors, but who knows?  Suggestions anyone?   

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
 
 
 


Gene214
Regular Member


Date Joined Mar 2007
Total Posts : 422
   Posted 6/12/2007 2:33 PM (GMT -7)   
OK Friends...
 
I'm back from the procedure and I am doing well, I think, except for pain.  It's bearable.  The doctor told my wife that it was a stone at the stricture site and he was not sure how it got there unless it was due to the surgery, which it no doubt was.  She said he seemed very happy he did not have to do any cutting, but he was not nearly as glad as I was!  Also the doctor said that it was very rare.  He may have not even seen it happen before, but he probably would not tell me that.   It was not a kidney stone but I suppose it could have come from somewhere else.  Anyway, now I am looking forward to gaining continence.  I suppose it will be just like starting from day one instead of four months.
 
It was a little frightening to get out of bed and pee for the first time.  I filled the commode with blood and little pieces of flesh.  The next time it was not nearly so bloody.  Time #3 it was even clearer until the end when very fresh red blood flowed freely.  That really scared me.  But that seems to have stopped now too.
 
The doctor said I could start Kegals again but I will wait a couple of days on that.
 
Thanks for advice and concern, everyone.  Also I think I should "repent" regarding negative comments, including those against my doctor.  He just happens to be a person who does not communicate very well.  Sometimes I think I'm like that, too.
 
One last thing:  I hope all of this has perhaps inspired hope in others who are experiencing continuing incontinence and even ed.  I have more hope now in those two areas.  I am anticipating getting over this.  But if I don't at least the c is gone, and that is the most important issue.  Right?
 
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
 
 
 

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