Incontinence issues

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

london2000
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 6/25/2009 4:06 AM (GMT -7)   
Hello everyone,

By searching this site, I've found some useful and reassuring information about incontinence following a prostatectomy. However, in the past couple of days my progress seems to be going backwards and I was wondering whether two steps forward and one back is the norm.

It is now three weeks since my catheter was removed. In those three weeks I've been dry at night when lying down and I've not leaked much when sitting unless I wriggle around. My problems have always been when standing and walking where my bladder has been unable to retain urine and there has been a steady and constant leaking out, so much so that a pad is saturated in about 30 minutes.

I did feel that I was seeing some improvement, particularly when standing in the mornings, and I was also able to make it upstairs to the bathroom without leaking. But in the past couple of days it's got a lot harder and the stairs are proving extremelly difficult.

I know three weeks is still early days but did most guys see a steady improvement with time or did they experience ups and downs in the journey to full continence?

I'm practising pelvic floor exercises twice a day, as recommended by my hospital. And, on the positive side, I'm still OK at nights and when sitting.

Best wishes to all, Roger
Diagnosed with PCa in April 2009, aged 59. PSA 9.5 ng/mL, Gleason 3+3, 3/8 cores positive on biopsy.

Had laparoscopic radical prostatectomy in 21 May 2009. Histopathology raised Gleason score to 3+4 but cancer confined to capsule with surgical margins being negative. Stage T2c.

Catheter removed on 4 June 2009. Currently trying to cope with incontinence issues!


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 6/25/2009 5:50 AM (GMT -7)   

For three weeks out your lack of control while moving about is worse than many but not off the charts although it is clearly hard to live with.  If you haven't done so already, try to cut your caffeine intake.  Not just coffee and tea but soft drinks such as Coke.  People also report varying reactions to alcohol so limiting that might help.  Aside from that, keep on with regular walking. It would not be common, but be alert to the possibility of a urinary tract infection – fever, burning while urinating, cloudy urine.  For any of these contact your doctor.

Healing does not always go in a straight line, but the fact that you do have limited control remains a good sign.

 


Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7
At 6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
At 10 weeks: no pad at night -- slight unpredictable leakage day/1 pad.


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 6/25/2009 6:36 AM (GMT -7)   
Hi Roger (aka london2000)...welcome to Healingwell. You have come to a great place for information related to PCa.

Your question regarding the "two steps forward and one step back" scenerio with incontinence. For me that was the case. I know some that haven't had that experience, but I certainly did. I was very very frustrated and at times I really thought I was going to be one of those that would never actually fully recover and would always wear a pad for the rest of my life. Good news, while it may have taken longer than most (8 months for me), I did finally reach full continence. And by continence I mean, no pad, no occassional leaks, no drips...even when lifting, sneezing or coughing which normally will trigger some leaks.

Best advice I can offer...keep doing what you are doing and give the body time to regenerate those nerves and you will recover.

Best to you
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
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral w/PNI - Gleason (3+3)6 Stage T1C
Robotic Surgery Sept 18, 2008
Pathology October 1, 2008 - Gleason 7 (3+4) Staged pT2c NO MX - Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
PSA 5 week Oct 2008 <.05
                   3 month Jan 2009 .06
                   6 month April 2009 .06


Dirtmover
Regular Member


Date Joined Apr 2008
Total Posts : 158
   Posted 6/25/2009 8:06 AM (GMT -7)   
thats actually not all that bad you seem to be right on track brother , it WILL come back and yes it will be good then bad day to day, thats totally normal, you should see noticeable improvement at 8 weeks and be shortly after that DRY , dont quote me  cuz everyones different , but you appear to be right where i was at good luck  and stay positive...............................................................dirt turn
Diagnosed November 2007   (43 years old )
PSA 3.9 / Gleason 6 / TC1 6 cores 1 shows 25%
Sugery scheduled 5/29/08 - City of Hope - Dr. Mark Kawachi
 "First show of the day"
 and now for the new ive been waiting for
 FINAL PATH REPORT:gleason upgraded to 3+4 T2c bilateral disease,tumor involvment 5%
extra prostatic extention:absent
seminal vesical invasion :absent
pathological staging:pTNM pT2 ORGAN CONFINED
margins free of carcinoma
usable erections ;6-6-08 with little blue pill
continence; 1 pad a day, dry at night
continence a non issue at 10weeks
 1 year p.s.a. undetectable


london2000
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 6/25/2009 2:17 PM (GMT -7)   
Thanks, guys ... for the reassurance and the advice.

I'm getting checked out tomorrow to rule out a urinary tract infection, as Geezer suggested. I have no overt signs but there could be something going on that might need treatment.

Good luck to you all, Roger
Diagnosed with PCa in April 2009, aged 59. PSA 9.5 ng/mL, Gleason 3+3, 3/8 cores positive on biopsy.

Had laparoscopic radical prostatectomy in 21 May 2009. Histopathology raised Gleason score to 3+4 but cancer confined to capsule with surgical margins being negative. Stage T2c.

Catheter removed on 4 June 2009. Currently trying to cope with incontinence issues!


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 6/25/2009 6:31 PM (GMT -7)   

Roger,

I agree that you are well w/in the expected zone of recovery. i found that specific body twists or bends would trigger a leak. i would also be leaky later in the day when I was tired. Try to measure progress on a weekly basis and you will see that you are better this friday than you were last friday. Individual days will have ups and downs as you learn to read and react to your new configuration. When leaks start, pucker up with those kegels.

Good luck and hang in there.

TeddyG

 


Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 6/26/2009 4:30 PM (GMT -7)   
Hi Roger,

After the removal of my catheter my situation was similar to yours, no leaks while seated or lying down. When standing I had essentially no control at all. I resorted to keeping a container nearby so I could void into it. After returning to work I would go through 10 to 12 pads per day.

I believe my incontinence problem was due to bladder damage that caused my surgery to go on for more than 6 hours.

At this point, nearly 7 months after surgery I am using only 1 pad per day. Sometimes I have to change it more often but overall I think I still see improvement. I'm looking forward to the day when I am fully continent. I really believe I'll get there. I'm sure you will start seeing improvement as well.

Good luck,

Bob
Age 69, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin

Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative

First post PSA < .1 Jan 16 2009
Second post PSA < .1 Apr 17 2009


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 6/26/2009 8:53 PM (GMT -7)   
Roger,
Fir me it took 4 months before I became continent. I still may have a drop or 2 later in the day if I'm doing some physical activity. I can normally control that if I remember to Kegel when I'm doing that. It is common for your pelvic floor muscles to get tired toward the end of the day and leak more. Just keep doing your Kegel on a regular basis and in time you will get there.
Age: 67
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
Dx 12/30/08
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
Surgeon: Dr. Randy Fagin, Austin TX.
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Bilateral 10-20% involved
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx
Negative margins
seminal vesicles clean
Lymph nodes: not dissected
continent after 4 months
1st PSA test 4/7/09 result <0.1


london2000
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 6/27/2009 12:56 AM (GMT -7)   
Thanks again, guys,

It's reassuring to know that others have been through the same experience as me and have come out the other end with such good results. I look forward to the time when I'm down to 1 pad a day.

Take care, Roger
Diagnosed with PCa in April 2009, aged 59. PSA 9.5 ng/mL, Gleason 3+3, 3/8 cores positive on biopsy.

Had laparoscopic radical prostatectomy in 21 May 2009. Histopathology raised Gleason score to 3+4 but cancer confined to capsule with surgical margins being negative. Stage T2c.

Catheter removed on 4 June 2009. Currently trying to cope with incontinence issues!


london2000
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/6/2009 3:22 AM (GMT -7)   
Hello everyone,

I thought I’d give you an update!

Following geezer’s suggestion, I got a specimen of my urine tested and I was diagnosed with a mild urinary tract infection. Within a couple of hours of taking the first dose of trimethoprim (the first of 5 days’ treatment) I was already noticing an improvement in my ability to stand up and climb the stairs to the bathroom without squirting. By the next morning, I found I could stand and move slowly around for 30 minutes and still void a small volume of urine – OK, it was only 60 mL but it was a start! Before trimethoprim treatment, I was retaining nothing when standing.

Today, I took the last dose of trimethoprim and this morning I was able to potter around the house for 2 hours, including going up and down stairs half a dozen times, and at the end voided 220 mL of urine.

I’ve still a long way to go, and in the afternoons and evenings I leak continually when standing, as I do when I’m doing “serious” walking in the mornings but I’ve made more progress in the past 5 days than I had in the previous month since my catheter was removed. At last I feel I'm going in the right direction and there's a distant light at the end of the tunnel. I suspect that the infection had started while the catheter was in place and has been with me ever since.

Apart from very slight irritation at the meatus while urinating, I had no symptoms of a urinary tract infection and, being described as mild, it probably wouldn’t have bothered most men but for someone like me, whose plumbing had been tampered with, it was enough to push me over the edge and exacerbate my incontinence.

I’m going to see what happens now that I’ve completed the treatment with the antibacterial. I may get another sample of urine tested to check that the infection has gone because some of these infections can be very stubborn. And if I start to see deterioration in my level of continence in the coming weeks then I will know to get myself tested again.

I would recommend anyone who is not seeing any improvement in their continence in the weeks following catheter removal to get tested for a possible infection.

Thanks geezer!

Best wishes to all, Roger
Diagnosed with PCa in April 09, aged 59. PSA 9.5 ng/mL, Gleason 3+3, 3/8 cores positive on biopsy.

Had laparoscopic radical prostatectomy in 21 May 09. Histopathology raised Gleason score to 3+4 but cancer confined to capsule with surgical margins being negative. Stage T2c. Nerves spared.

Catheter removed on 4 June 09. Currently trying to cope with incontinence issues!


engineer55
Regular Member


Date Joined May 2009
Total Posts : 121
   Posted 7/6/2009 1:22 PM (GMT -7)   
Hey thanks for the info, I am at 12 days out, never had a problem laying down, standing and walking is not too bad, but the worse is when I sit.- nice to see how other people progress on this issue.

Here is a question, I don't get the urge to pee like I use to, I just figure its been a couple hours so lets drain it. Is that the future with no prostate. I guess I am concerned about overload at this point.
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.


london2000
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/6/2009 2:07 PM (GMT -7)   
Hi Engineer,

When was your catheter removed? It can't have been very long ago if you're only 12 days out of surgery on 24 June.

It's very early days for you, and your bladder, external sphincter and pelvic floor muscles will still be adapting to their new environment - they didn't have to do anything while your catheter was in. I get the urge to urinate but sometimes find it difficult to know what volume will be voided - it's usually a surprise!

Most people in the early days seem to be OK lying and sitting, but not standing and walking. If you're able to retain urine while walking you are doing very well but I can't explain why you leak when you are sitting. Perhaps you are pressing on something which opens the tap?

Roger
Diagnosed with PCa in April 09, aged 59. PSA 9.5 ng/mL, Gleason 3+3, 3/8 cores positive on biopsy.

Had laparoscopic radical prostatectomy in 21 May 09. Histopathology raised Gleason score to 3+4 but cancer confined to capsule with surgical margins being negative. Stage T2c. Nerves spared.

Catheter removed on 4 June 09. Currently trying to cope with incontinence issues!


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 7/6/2009 6:23 PM (GMT -7)   

Guys,

Hang in there and consider doing more kegels. Like starting to work out, your muscles build up strength by exercising them. I found myself doing them walking, sitting at traffic lights and sitting in my office. Heck, there is nothing like kegels in church too (along with a prayer for support). Build up that strength inside and you will be seeing progress.

keep squeezin',

Ted


Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


london2000
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/6/2009 11:36 PM (GMT -7)   
Thanks, Ted, I'm doing my pelvic floor exercises but I have been warned that you can do too many which tires out the muscles.

The point I was making in my posting is that my lack of progress in the first month post-catheter removal was due to an almost symptomless urinary tract infection. Once I started treatment for that infection, my continence improved dramatically, and only then did I start to see the benefit of the Kegels I'd been doing pre-surgery and from day one after catheter removal.

The possibility of a subclinical UTI is something that we should stay alert to because, as I found out, it can hinder your progress.

Still squeezin',

Roger
Diagnosed with PCa in April 09, aged 59. PSA 9.5 ng/mL, Gleason 3+3, 3/8 cores positive on biopsy.

Had laparoscopic radical prostatectomy in 21 May 09. Histopathology raised Gleason score to 3+4 but cancer confined to capsule with surgical margins being negative. Stage T2c. Nerves spared.

Catheter removed on 4 June 09. Currently trying to cope with incontinence issues!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 7/7/2009 7:58 AM (GMT -7)   
Roger,

I tend to agree with you. My own dr. said not to over do the kegal thing, he said too many men wanting to do something to help their incontinence end up overdoing exercising an already delicate area, leaving you with tired and weak muscles.

Glad you are doing better.
Age 56, 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
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, 5/9 .10, 6/9 .11, July 13 - meet with radiation oncologist
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, February 25, 2018 8:54 PM (GMT -7)
There are a total of 2,933,374 posts in 321,845 threads.
View Active Threads


Who's Online
This forum has 160508 registered members. Please welcome our newest member, dabiri07815.
441 Guest(s), 9 Registered Member(s) are currently online.  Details
imagardener2, timcebu, Michael_T, Serfr, Mergirl, InTheShop, JDill, JakeB, Jack & Diane