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stxdave
Regular Member


Date Joined Nov 2008
Total Posts : 65
   Posted 2/22/2009 1:09 AM (GMT -6)   
Men have been told for over 20 years that 50% of us will be incontinent after prostate surgery. Most will be fairly continent at three months and the majority will be continent after 1 year. Some will never gain continence and have to use artificial means to become dry again.

My question is: what is different between that 50% that have almost total continence after surgery, and those that don't ?

I had an RRP in August 2007 and was 99% continent after surgery. Things were going great until about September 2008 when I started having a slow stream and it took quite a while to finish the job. In December I had a cystoscopy and it was determined I had a stone that attached to a suture at the bladder neck and it was almost totally blocking the urethra.

A transurethral resection of the bladder was performed to remove that stone and a couple of other calculi. This was an outpatient day surgical procedure and the only down side the urologist forwarned me of was going home with a foley catheter. I live 250 miles from the medical center and we stayed in town overnight, going back into the office the next morning to have the foley removed. This was Thursday morning.

We traveled home on Thursday. At 3:00 AM on Friday morning I was in the local emergency room to get catherized. By the time all the paperwork was filled out, I started going again and went home. Friday night at 8:00 PM I was back in the emergency room and had another foley catheter installed. The foley remained in through the Christmas holidays. When I had the foley removed on December 29th I was and continue to leak like a sieve.

My anger at having to contend with urine 24 hrs a day makes me ask why so many of us have to contend with it. What are they doing to 50 of us that they aren't doing to the rest of us. I've heard the tap dance and I believe we are being told the truth as they accept it, but I don't believe it is the truth. I don't believe they care enough to find out why.

If we were breast cancer patients instead of prostate cancer patients we would be demanding better results. We just can't complain as well as our wives and girlfriends do.

Dave
Dx'd 1999, Age 60, PSA 43, Gleason (3+4=7), T3c
42-3d EBRT w/Lupron/Casodex for 24 months and PSA remaining to be <0.1 for the entire 24 month period.
July 2001 - 2nd opinion required to go intermittent ADT.
MDAnderson biopsy revised Gleason (4+5=9).
Intermittent ADT, Lupron only, with PSA threshhold established at 1.0.
March 2007 - Diminishing returns with Lupron, conferred with MDA urologist for bilateral orchiectomy. Uro asked for biopsy of prostate again. Biopsy resulted in tumors found with Gleason (5+4=9).
August 2007 - RRP and bilateral orchiectomy. PSA <0.1
99% continent immediately
September 2008 - PSA 0.45
November 2008 - PSA 0.67
December 2008 - Resume Casodex
December 2008 - Stricture in bladder neck requiring surgical removal. 99% incontinent immediately.


Life is not waiting for the storm to pass, it's learning to dance in the rain.


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/22/2009 6:56 AM (GMT -6)   
Hi Dave nice to see you here at HW forum which is about totally open in comparison to WebMd's forum, btw. 
I don't have anything to mention on this, but thought I would say hello and tell others you are also unique in your disease level, treatments and results and may I say know you can contribute plenty more, if and when you might wish to.
I hope you get some input and decent answers on this.

Neutrondbob/zufus-Bob P.


 

Post Edited (zufus) : 2/22/2009 5:14:08 AM (GMT-7)


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 2/22/2009 9:49 AM (GMT -6)   
Hi Dave, I totally understand what you are saying.

My husband Pete is still incontinent after his salvage surgery in 2006. He did have an AUS installed in September of 2008. That is usually very very successful. but because of his former radiation, and then surgery after the radiation, there was so much damage to the bladder neck and surrounding areas, that the AUS is not totally perfect, but it is MUCH better than before. Now he uses two pads a day and one at night, as before it was 10 or more pads a day....
.There are others here, KW, Gene, and Berb, who may jump in and tell you about their wonderful success with the AUS...(artificial sphincter) Im glad to see you at this forum, and you will like the answers and people here. Very helpful, kind, and knowledgeable...... 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 2/22/2009 9:42 PM (GMT -6)   

  I would say the vast majority regain 90% or more of their continence back.  I'm not sure I would count a few drips a day as incontinent.  This is just my opinion.

    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  


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/22/2009 9:49 PM (GMT -6)   
i agree with kw above, it we were all being 100% honest, I wonder how many would admit that perhaps we dripped a bit here and there before our bouts with PC, you know, that little bit left in the tube, the time you didn't shake one more time. When I think back to pre-surgery days, I now realize I was in that category too.

David
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3
3rd Biopsy 9/8 Positive 7 of 7 cores pos, 40-90%, Gleason 7
Open RP surgery 11/14/8, Right nerves saved, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery   2/9 .05
 
 


BillyMac
Veteran Member


Date Joined Feb 2008
Total Posts : 1858
   Posted 2/22/2009 10:08 PM (GMT -6)   
Hello Dave. Sorry to hear of this trial with continence. I was operated on at the same time as you and have noticed that although I am continent the stream is not as strong now at 18 months as it was at 12 months. It is not causing a great problem though and after reading of your complications I think that I'll just leave things be. But you are right..........most times us fellas will just grin and bare things.
Bill
1/05 PSA----2.9 3/06-----3.2 3/07-------4.1 5/07------3.9 All negative DREs
Aged 59 when diagnosed
Biopsy 6/07
4 of 10 cores positive for Adenocarcinoma-------bummer!
Core 1 <5%, core 2----50%, core 3----60%, core 4----50%
Biopsy Pathologist's comment:
Gleason 4+3=7 (80% grade 4) Stage T2c
Neither extracapsular nor perineural invasion is identified
CT scan and Bone scan show no evidence of metastases
Da Vinci RP Aug 10th 2007
Post-op pathology:
Positive for perineural invasion and 1 small focal extension
Negative at surgical margins, negative node and negative vesicle involvement
Some 4+4=8 identified ........upgraded to Gleason 8
PSA Oct 07 <0.1 undetectable
PSA Jan 08 <0.1 undetectable
PSA April 08 <0.001 undetectable (disregarded due to lab "misreporting")
PSA August 08 <0.001 undetectable (disregarded due to lab "misreporting")
Post-op pathology rechecked by new lab:
Gleason downgraded to 4+3=7
Focal extension comprised of grade 3 cells
PSA September 08 <0.01 (new lab)
PSA February 09 <0.01


Lungman
Regular Member


Date Joined Jan 2008
Total Posts : 276
   Posted 2/23/2009 8:19 AM (GMT -6)   
Dave, sorry to hear about your issues with regards to incontinence. I was very fortunate to have had no issues with incontinence following catheter removal. Truly I don't think physicians have a reliable way to know or predict how any of us will respond, very much variable from one man to the next. I can understand your frustration with it and can also understand how frustrating/devastating this issue must be. In my case, my wife is wonderful and very supportive with respect to my ED, but she can't understand my frustration with it. I guess it is just a "Man" thing, but I feel a great sense of loss and anger and can't convey this to her. Even though there can still be tenderness and satisfaction is our lives, there can't be "that" anymore without pharmaceutical support, and I can't find the female equivalent for explanation. Sure, the statistics say most of us recover, but when you are in the 90% that should regain function and DON'T the docs just don't have the answer. Men in general are stoic, don't share frustration well, and are embarrassed to talk about these issues, but these things are devastating to us, because in my case, I feel like less of a man because of it.

Randy
46 you when diagnosed, now 48
Pre-Op PSA 9.9
1 of 12 cores positive, Gleason 3+3
DaVinci on 9/5/2007
Post-Op Gleason 3+6, Negative Nodes and Margins
Less than 1% of prostate involved with CA
3 Month PSA 0.01, 6 Month PSA 0.01, 9 Month PSA 0.01
One Year PSA 0.01
Incontinence resolved 9/15/2007, one day after cath removal
ED showing significant improvement.
Occasional Success with Oral Meds
Success with BiMix


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 2/23/2009 8:23 AM (GMT -6)   
Greetings, Dave.  Sorry to hear where you are but appreciate your willingness to share your experience with those of us on this forum.  While I consider myself to have been blessed with great results, I too would say it is definitely not perfect.  My stream varies from strong to dribbling and even though I would consider myself continent, I would also have to admit that I leak a few drops now and then for one reason or another.  Unfortunately, I tend to leak a drop or two at very inopportune times like when my wife is trying to be nice to junior.  I'm not sure why but something about sexual excitement tends to throw a kink into all kinds of things - including continence.  I'm not sure what the answers are, but appreciate your willingness to share your vast experiences.  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

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