Incontinence very bad at 3 weeks post catheter removal

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Bill23
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 4/27/2007 1:04 PM (GMT -6)   
Anyone else had this problem? I would appreciate any comments.

I had Robotic RP on 4/2, catheter removed on 4/9. Gleason 3+3=6, PSA 3.5 (jumped up from 1.5 the year earlier), final biopsy showed no cancer on the margins. No erection yet, of course, but I really don't care about that at this point. Doc said he spared all nerves, outlook is excellent. I recovered very quickly,  except for 1 problem......

Whenever I'm in a standing or walking posture, I leak continuously. Using anywhere from 10 - 15 pads per day. The leak is so bad, my bladder never fills. I'm doing 10 sets of Kegel excercises a day. I don't leak when sleeping, and in fact my bladder typically fills to 8 - 12 ounces at night. I also don't leak when sitting. But as soon as I resume standing, the faucet turns on.

I'm really getting nervous about this, and would appreciate hearing about similar problems / outcomes that some of you "veterans" have had.
 
Thanks...
 
 

lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 4/27/2007 1:53 PM (GMT -6)   
Hi there Bill!

I've bumped a significant post to the top (KW's Journey and battle with incontenance) . . . . please read his journey and realize the key is to keep up the kegals and never give up.
;o) Linda & Bob
Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6. Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER! Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more aggressive, previously undetected cancer) PSA UNDETECTABLE November 2006 AND February 2007.


Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/27/2007 6:36 PM (GMT -6)   

Hi ~ Bill & Loved Ones,

 

Caring Enough to Share….. 

 

  A   “Special”  Warm Welcome  to  You!   yeah   

 

This is truly a great forum!!! ~ “You” have joined! You are now part of our forum family ~ a group of wonderful individuals who are so willing to share their journey.  Thank you for joining all of us in the continued road to HealingWell…..

 

KNOWLEDGE IS POWER... and POWER conquers fear

 

We are truly pleased you have reached out to all of us!  The Helpful Hints page will help direct you to a few… threads…to get you started.   There are soooo many ~ take the time!!!

Hopefully ~ as time goes on you will see positive change.  You’ve been on the healing/recovery stone now for 18 days….. you still have a lot of healing going.  You’ll get tired of us telling you this… but ~ give yourself time…  

 

There are several threads with Kegel information.  Hopefully you will find something here that can help you find the right “schedule” for you.  Kegels can tire the sphincter muscle so you may want to revamp your daily program.  See KW's Journey,

 

Keeping you Extra Close in our thoughts and prayers.

In New…Friendship ~ Lee & Buddy

 

“God Bless You” 

It's a little prayer  ~  "God Bless You"  ...but it means so much each day,

It means may angels guard you and guide you on your  way

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)


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 :)

Post Edited (bluebird) : 5/24/2007 5:31:05 AM (GMT-6)


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 4/27/2007 8:30 PM (GMT -6)   
Bill23,

I did not have the degree of leaking at three weeks post op that you have but I do know that I over did the Kegels and that actually made it worse. The pelvic muscles have to be exercised and trained but just like any muscle it can get tired if overly stressed and not be able to do anything. I would try doing two sets of 10 kegels a day. One in the morning and one about 12 hours later. Hold each one about 5 seconds and then 5 seconds between them. The other concern is if you are doing then right. Can you stop your stream when you do a kegel? If not, then you may need to change your method. It has been mentioned here that imagine you are trying to use your penis to suck up the urine similar to a straw effect. If you are tensing your abdominal muscles then you are doing them wrong.

Tamu
Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07
Began injections in April '07


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 4/27/2007 9:28 PM (GMT -6)   
I agree with Tamu. Go easy with the Kegels. And don't flex too hard. Just take it easy and be sure you are doing them properly.
I leaked like hell for weeks after surgery and was running to the head constantly. I'd make one false move and the leaking would start. For me, the trick was to continue making those false moves -- it seemed like that's when my situation improved. It took me about seven weeks till I could lift that gallon of milk, turn around to back the car up; bend and pick something up etc. without a significant leak
Also, at about week five, I started to try to hold on before urinating -- first for a half hour, then an hour if possible. It helped immensely and gave me confidence. Now, I have very good control, but I'm almost four months out.

Patience -- UGH.
It isn’t easy. Now I'm struggling to have the same patience with the ED thing.
One day at a time buddy. We'll all get there.
Best to ya!

54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07


eglman
New Member


Date Joined Apr 2007
Total Posts : 5
   Posted 4/28/2007 11:56 AM (GMT -6)   
Bill23,
Welcome. I had a lot of leakage (and bleeding) until I cut down on the Kegels. My doctor had recommended 10 sets of 10 a day and this turned out to be far too many in my case. I found that 2 sets of 6 a day worked for me. I think this is an individual thing - certainly exercising the muscles is good, but as others have said the muscles can get very tired. It took about 4 days after I slowed the exercises to see improvement. What really gave me the clue I was overdoing it was that I had more bleeding when I did the exercises. My doctor confirmed that for some people the Kegel regime is too much.

Thanks, Eglman

52, Biopsy 8/06, Stage T2b, PSA 7.2, Free PSA 17% Gleason 5 (3+2) [20% in 2/7 cores], negative DRE and bone scan. RP with DiVinci robot 10/06. Neg Margins, Neg Seminal invasion, Post Surgery Pathology Gleason 6 (3+3).

Bill23
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 4/28/2007 2:51 PM (GMT -6)   
Eglman, PianoMan:
 
Thanks for your inputs.  You both said that you had a lot of leakage.  What I'm concerned about in my case is the fact that I drip so steadily when just standing,  that my bladder never accumulates any volume of urine..... it all flows into the pads.  Therefore,  the only time I'm able to consciously urinate is during the night one or twice,  and when I wake up. Have either of you had this experience,  or do you just have the usual stress incontinence when moving,  getting up from sitting, coughing, etc?
 
Thanks... Bill

Age 54,  PSA always 1.5,  jumped to 3.5 in 10/06.
Biopsy 11/06, Stage T1c, Gleason 6 (3+3), 25% in 1 of 12 cores.
Negative Cat Scan, Bone Scan, and DRE.
DaVinci RP 4/2/07, Catheter out 4/9/07.
Final Pathology Negative Margins,  Negative Sem. Invasion
 
 
 
 


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 4/28/2007 3:20 PM (GMT -6)   
Bill,
 
Your Week Three sounds just like my Week Four when I returned to work on my feet all day.
My bladder never "caught" any urine to speak of while I was walking around at work until Week 6.
The long-distance runner in our group (I am terrible at remembering names) has had similar problems. 
I think the combination of just being tired, surgery traumas, etc. play havoc with your continence.
I would Keep doing your Kegel Exercises three times a day until you get SOME positive response.
Only then would I increase the kegel exercises a little more as you improve.
I compare this to someone learning to play the trumpet.  You can't practice much with a weak lip.
 
Don't stop walking around just because you are leaking!  SLOWLY building your body strength will ulimately help your body coordinate the continence you seek.
Be patient.  A few very fortunate patients don't have any issues to speak of.
 
I would read Bluebird's helpful threads. 
I personally am a big fan of positive thinking. (I like to read Joel Osteen.)
 
Run the Good Race!
 
CCedar
(1- [sq rt 5]) /2  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:)
***************
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 4/28/2007 8:59 PM (GMT -6)   
    Hey Bill,  I seem to be one of the worst leakers on here.  Check out my "kw's Journey....."  I have the exact same symptoms as you (at 6 months post op).  I fill and hold great while sitting and sleeping. I Leak all day at work. I'm usually on my feet all day at work.  I have to change pads by a time schedule to keep from "breaking out".  I have had two treatments of collagen injections which did not improve anything.  Each time he has run a scope up the urethera he says the sphincter muscle looks and works great. 
 
    I would also cut back the Kegals to 3 set's of 10 a day.  At your point you could be easily overdoing it.
 
    Don't mean to scare you with my story.  But there are a few of us that have more leaking than others for what ever reason.  I have seen two people on here that both went to the same "robotic" Dr.  One is doing great with the leaking.  The other is having as bad of a time as "we" are.
 
    Remember....there is alot of evidence out there that says that it can take up to one year for everything to start working agian!  Take your time and try not to worry too much.
 
    Holler at you later...
 
    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.
    May 30th Follow up and 3rd Post Op PSA
   


Bill23
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 4/28/2007 10:00 PM (GMT -6)   

Hi Cedar Chopper.....

Thanks for the reply... it seems like many of you are suggesting that I might be overdoing the Kegels,  so I will try cutting back for a while.

You mentioned that you had a sudden improvement at week 6.  Has this improvement maintained itself over time?  It seems hard to believe that one could go from such excessive leaking to a more normal condition so quickly.  This incontinence thing certainly has a wide range of potential degrees with everyone.

Thanks....Bill

 


Age 54,  PSA always 1.5,  jumped to 3.5 in 10/06.
Biopsy 11/06, Stage T1c, Gleason 6 (3+3), 25% in 1 of 12 cores.
Negative Cat Scan, Bone Scan, and DRE.
DaVinci RP 4/2/07, Catheter out 4/9/07.
Final Pathology Negative Margins,  Negative Sem. Invasion
 
 
 
 


Bill23
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 4/28/2007 10:12 PM (GMT -6)   

Hi KW.....

Sorry to hear you are having such a bad time as me after 6 months. From all I have been able to learn about the collagen injections,  they are a marginal solution at best.  It certainly is a scary situation,  especially when considering possible solutions such as artificial sphincters and sling surgery.  Of course,  those options are still out in the future for us.  Hopefully our situations will resolve before then.  Oh well,  its' time to change my pad again!

Thanks....Bill


Age 54,  PSA always 1.5,  jumped to 3.5 in 10/06.
Biopsy 11/06, Stage T1c, Gleason 6 (3+3), 25% in 1 of 12 cores.
Negative Cat Scan, Bone Scan, and DRE.
DaVinci RP 4/2/07, Catheter out 4/9/07.
Final Pathology Negative Margins,  Negative Sem. Invasion
 
 
 
 


sterd82
Regular Member


Date Joined Sep 2006
Total Posts : 187
   Posted 4/29/2007 12:00 PM (GMT -6)   
Bill---
 
As I recall, at three weeks post surgury, I was doing 8-10 pads a day, no leaking at night,  very similar to what you're talking about.   Seems it cleared up in "stages"...which seems pretty typical...sudden big leaps in progress....it took me three months to get fully pad free --- and have been fine ever since (even with post surg- RT).
 
It seemed like it took foreven to clear up, and I got really bummed out over it....HANG IN THERE --- time does some amazing things!
Sterd82
Age 46
Initial PSA march of 2006: 28
PSA May of 2006: 39
8 of 12 cores malignant
Open Radical Prostatectomy 6/9/2006
Pathological Stage T3a, Positive Surgical Margin
Gleason 3+4
Post surgury PSA fluctuated between .04 and .09
PSA rose to .24 in November of 2006
6 month hormone therapy initiated December 1. 2006
36 sesions of IMRT Ended Feb 1, 2007


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 4/29/2007 12:14 PM (GMT -6)   

Hello Bill

Welcome. I am Kitt and I am glad to meet you.  It looks like you got some great advice and going to the source of experience is great to get answers you need.

Also talk with your surgeon and see what his/her opinions is.

Take care of you.


 
Respectfully
 
Kitt
 
Depression 25 years, Husband Crohns Disease 30 years
__________________________________________________ 
"If you doubt you can accomplish something, then you can’t accomplish it. You have to have confidence in your ability, and then be tough enough to follow through.”
Rosalyn Carter
 


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 4/30/2007 4:13 AM (GMT -6)   

Bill,

I'm at work and need to get back to the job.  However, I just posted a response to KW about why I think many have more trouble than others with incontinence on my thread "Zen and the Art of Symphonic Continence."  Short version:  Your bladder is not happy!  Get stronger and give it time.  Learn from women.

Yes, (except for a bout with drinking that set me back five days!), I saw rapid improvement after week six - after learning to do "elevator kegels."

I leaked just like you and KW do now in weeks four and five.  If you have more time, my weekly Cedar Chopper thread that Bluebird set up for me chronicles my improvement - and a lot of "cheerleading" about staying positive.
 
ICTHUS
 
CC
~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*
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:)
***************
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?


Mike A
Regular Member


Date Joined Feb 2007
Total Posts : 213
   Posted 4/30/2007 6:49 AM (GMT -6)   
Bill,
Hang in there! I never had the same volume of leakage that you have, but three weeks post-op I was sure I'd be wearing pads for the rest of my life. It has now been almost four months since my surgery, and I'm down to one pad a day, and I change that for hygene more than fullness. I had some real improvement when I started doing my kegels only when I urinated. Starting and stopping the flow as I stood there really showed me the muscles I needed to work on. I still leak small amounts when I stand or sit or strain, but I now believe thst someday soon I'll be totally dry. Best of luck and like so many others have said, you really found a wonderful forum here!
Mike in Webster, NY
June 2005 - Age 53 PSA 4.8 at regular physical
October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist
November 2005 - Biopsy negative
July 2006 - PSA 5.9 at regular Physical
October 2006 - After several more rounds of anti-biotics PSA 8.1
November 2006 - Second biopsy - Positive
December 2006 - Gleason (3+4=7) CT Scan and Bone Scan Negative
January 2007 Robotic Prostatectomy - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear.
February 2007 - Three to four pads a day, no erection with viagara.
March 2007 - Down to two pads a day, had first intercourse with Erecaid pump and bands, otherwise still flat tire.
April 2007 - PSA 0.02 and a great relief! Down to one pad a day. Still unable to achive erection without pump. Patience Patience!!!!!!
Next appointment July 2007

BenEcho10
Regular Member


Date Joined Jan 2007
Total Posts : 133
   Posted 5/1/2007 8:06 PM (GMT -6)   
Hi Bill 23,

I had the exact same situation. Leaking when standing and walking and not leaking when sitting or lying. That means that you have sphincter control so you are very likekly to regain full continence.

Three weeks is way too early to be worrying about all this. I was also using 10-20 pads a day at that point. You are no doubt seeing postings by people with near total urinary control between 0 and three weeks after surgery. That is the exception, not the norm. The norm is three to six months.

Hang in there pal. It will get better.

Ben
DIAGNOSIS: 09/25/06. Age 49. PSA 4.6. PSA free 2%. Clinical pathology: Gleason 10. Stage T2a.           
 
SURGERY: 11/08/06. RP at Johns Hopkins. Excised widely including nerve bundles. Surgical pathology Gleason 10. Stage T3a (positive margin at apex.) Negative seminal vesicles, lymph nodes, and bone scan.
 
POST OP: 12/15/06: First post op PSA was 0.00. 02/12/07: Second post op PSA was 0.00.


Bill23
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 5/2/2007 8:42 AM (GMT -6)   

Hi Ben and Mike:

Thanks for your replies.

Ben,  it does seem like your situation is a lot like mine.  I always expected to have some degree of incontinence,  but not the total incontinence I experience during the day.  As I mentioned in my initial post,  my bladder NEVER accumulates any volume of urine,  it just drips out as fast as my kidneys supply it.  Is this the same experience you had when you were using 10-20 pads a day? Or were you able to actually build up a portion of urine in your bladder?

Also,  as I mentioned,  I am able to accumulate 8 -12 ounces at night, and when urinating my stream is super strong.  I try to kegel it at this point,  and can only slow it down,  not stop it. Also,  at times,  I begin to leak as soon as I get out of bed, before I get to the bathroom. Did you have similar experiences?

Thanks,  Bill 


Age 54,  PSA always 1.5,  jumped to 3.5 in 10/06.
Biopsy 11/06, Stage T1c, Gleason 6 (3+3), 25% in 1 of 12 cores.
Negative Cat Scan, Bone Scan, and DRE.
DaVinci RP 4/2/07, Catheter out 4/9/07.
Final Pathology Negative Margins,  Negative Sem. Invasion
 
 
 
 


Mike A
Regular Member


Date Joined Feb 2007
Total Posts : 213
   Posted 5/2/2007 12:49 PM (GMT -6)   
Bill,
I remember that for the first couple of weeks, when I got up in the night to urinate, I reached in and pinched myself to keep from gushing. Hopefully you'll start to see some inprovement soon. I know it seems impossible, but try to be satisfied with baby steps of improvement. Each one means you're still on the right road!
Mike
June 2005 - Age 53 PSA 4.8 at regular physical
October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist
November 2005 - Biopsy negative
July 2006 - PSA 5.9 at regular Physical
October 2006 - After several more rounds of anti-biotics PSA 8.1
November 2006 - Second biopsy - Positive
December 2006 - Gleason (3+4=7), Tumor T1c, CT Scan and Bone Scan Negative
January 2007 Robotic Prostatectomy - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear.
February 2007 - Three to four pads a day, no erection with viagara.
March 2007 - Down to two pads a day, had first intercourse with Erecaid pump and bands, otherwise still flat tire.
April 2007 - First Post-Surgical PSA 0.02 and a great relief! Down to one pad a day. Still unable to achive erection without pump. Patience..Patience!!!!!!


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 5/2/2007 3:10 PM (GMT -6)   
Hi Bill:  Sorry for the late reply.  You asked if I'd had leaking not related to stress/movement and the answer is yes.  During the first couple of months, i would leak spontaneously at times during the day -- generally early evenings and especially after having my beloved beer and/or wine. 
 
After surgery, during the first three weeks or so I would gush from the slightest bit of stress.  As I've said before -- one false move like trying to pick a coin off the floor, swallowing a little water down the wrong pipe and coughing etc.  For some reason, sneezing has the opposite effect on me -- makes me feel like I'm doing a naturtal Kegel.  I've never had the slightest drip while sneezing.  Go figure.  Coughing!! --- Fuggedaboudit!  Coughing opened the flood gates and at this stage of my recovery, it hurts my stomach muscles, which are probably still healing.
 
If you're holding at night, it sounds like your sphincter is ok, just needs to strengthened up a bit.  In my case, I have really lightened up on the Kegels.  No dily reps. -- I just gently flex those muscles when I think of it during the day.  At first, I was fanatical about the Kegels but in my case, since I stopped being so diligent about them, my bleeding went away and my incontinence improved drastically.  As of last week (3 1/2 months out)  I have not worn a pad.  I see little yellow spots in my jockies almost every day, but I probably had that going on all my life.
 
BUT -- DON't ABANDON THE KEGELS, BASED ON MY EXPERIENCE!! EVERYBODY IS DIFFERENT AND HAS THEIR OWN ISSUE(S) RELATING TO INCONTINENCE.
 
I believe our pelvic muscles will have to be exercised for the rest of our lives.  It's just a matter of how intensely and how often.
 
Oh, one more thing.  How much liquid are you consuming each day and are you spacing it out?  I remember being told to drink 3 1/2 quarts of water each day after surgery.  That's 14 eight-ounce glasses of water a day!!  Add to that the coffee, soda, juice,  etc.  and it was no wonder I was running to the head like crazy.  It's important to stay hydrated, but that was a lot of water.  Now I'm back to my old fluid intake, which doesn't include anything near 3 1/2 qts. a day of pure water.
 
Best to ya!  You'll get there.

54 years old

PSA = First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06 (6 out of 8 cores positive), both lobes, Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.

First post-surgery PSA -- Undetectable, 2/20/07

Post Edited (PianoMan) : 5/2/2007 3:16:13 PM (GMT-6)


Berb
Regular Member


Date Joined Mar 2007
Total Posts : 93
   Posted 5/10/2007 3:51 AM (GMT -6)   
Hi Bill,

I'm the long distance runner Cedarchopper mentioned.

My experience has been very much like yours. I'm now 17 weeks post op. Pad usage remains around 8 per day, no control when walking or standing, some leakage at night (I suspect when I roll over), almost complete control when sitting which I can control to some extent if I squeeze hard while on route to the toilet. Early on, during the evenings I had to squeeze my penis just to get from the bed to the toilet without losing it all. That no longer happens, and I now lose little at night.

Like KW and BenEcho, I'm in the group which is taking longer to come good. This became clear to me a couple of months back, at which point I decided that I would ignore the inconvenience as much as possible and get on with life. It's not as hard to do that as it sounds. I work full time, travel quite a bit including overseas, and I'm back to running long distance again with some major endurance events on the horizon.

I am currently doing kegels , including Cedarchopper's elevator versions, for around 1-2 hours a day all up. My surgeon thinks that at 17 weeks this is the way to go. At your stage however, I was hard pressed to do 10 reps 3 times a day without significant pain in the perineum, so I support the advice of others to go easy at this time.

Good luck.

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


Bill23
New Member


Date Joined Apr 2007
Total Posts : 18
   Posted 5/10/2007 6:07 AM (GMT -6)   
Thanks Berb....
 
You're right,  our situations are very similar,  with the exception that you have a much better philosophical outlook than I do!  I'm just coming off of 5+ years of dealing with both parents in nursing homes,  both with severe incontinence issues,  and this is really hitting me hard mentally.
 
Anyway,  my uro suggested taking a few biofeedback sessions just to make sure I'm doing the Kegels OK,  so I will start that next week.  It seems that from 0 to 18 months post surgery,  there isn't a whole lot they have to offer us in terms of solutions other than kegels.  Hopefully,  we will clear up to acceptable levels before having to consider artificial sphincters and sling surgery.
 
Good luck to you.
 
Bill

Age 54,  PSA always 1.5,  jumped to 3.5 in 10/06.
Biopsy 11/06, Stage T1c, Gleason 6 (3+3), 25% in 1 of 12 cores.
Negative Cat Scan, Bone Scan, and DRE.
DaVinci RP 4/2/07, Catheter out 4/9/07.
Final Pathology Negative Margins,  Negative Sem. Invasion
 
 
 
 


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 5/10/2007 7:21 AM (GMT -6)   
Hi, Bill. We, too, are in the "slow" group. The emotional part of it is sometimes overwhelming and you have it compounded by your parents' ordeals.

No matter how much you're told to "expect it" before surgery, there's no way to actually mentally prepare for it.

The "good news" is that you can hold it when sitting and lying. That - according to our doc - means you'll be coming around in time. The capability is there, just not when you're active at this point.

Just recently, we've seen a major turnaround and are down to 2 pads a day that are barely used. But, that is at nearly 8 months, too, after major gushing all that time. I don't say that to be discouraging - it's just the way it is for some of us. What I mean to get across is that greater continence can simply happen overnight, as ours seemed to. What a relief and source of pride when it hits, too!

Hang in there - you're certainly not alone in this part of the process.
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now - Next one: 4/17/07
 


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 5/10/2007 8:23 AM (GMT -6)   

Bill,

I too was skeptical at first.  However, now I'm a big fan of the bio-feedback sessions.  There is one procedure they use to alter your recruitment pattern of the pelvic floor muscles ("Kegels") that seemed to help a lot:

The sensors used to detect and coach contractions can also give a small electrical stimulus.  During this treatment, I was asked to flex at 10 per cent strength every time the (tingling) shocks came on.  It seemed silly at first.  However, I am working 14 hour days and lifting tons of Produce and only leaking one half pad a day.   In the last three weeks/sessions of electrical stimulus and "elevator kegels," I have gone from 8 pads a day to less than one.

This treatment REALLY helps with learning the "elevator" techniques that mimics exactly what seems to work when walking and lifting. Your kegel muscles coax the unconsciously controlled bladder valve to open and close.  The bracing done with the kegels for lifting and standing cannot be maintained for Berb's marathon!

Don't let the uncertainty and "chrysalis of unknowing" surrounding your perfect health keep you from taking flight under the wings of the Spirit of God.

Keeping you in good thoughts.
 
CCedar



~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*
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:)
***************
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?

Post Edited (Cedar Chopper) : 5/10/2007 8:38:13 AM (GMT-6)


pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 437
   Posted 5/10/2007 1:35 PM (GMT -6)   
Bill,

I am 1 week post catheter (2 weeks post DaVinci) and am the excat same state as you... No problem laying (or even turning over when I do it carefully) or sitting.... And I can make it from laying bed or sitting in living room to bathroom keeping kegals tight... When standing I can also keep dry, but as soon as I relax the kegals and move, I squirt.

On my "walks" my bladder also continuously drains and lately I have put a small plastic cup inside my shorts/pad to catch the drips if I am in a "private" area like my yard... Then I just periodically empty the cup and this saves me from walking around in a wet pad.

My kegal regime given to me when catheter was taken out...

3 times a day (1 laying, 1 sitting, 1 standing)...
Start at 5 reps of up to 10secs with equal rest inbetween
Building up to 15 reps/10sec as I became stronger.

I am doing the laying set before getting out of bed, standing at noon, and sitting in evening.
I am in to the 10-15 reps range at 10secs each right now...
I am also starting to try the elevator kegals that Cedar talks about.

I am starting to see a very slight improvement at times (early in day) while walking... I seem to be able to hold a few drops now... Later in the day, reverts to old "flush".

So far this has also been very discouraging to me... I wanted to be one of the dry when you got home cases... But that is not the hand I was dealt... :-( BUT: I no longer have a prostate filled with cancer!!!!! and that is a GOOD THING!

So, I will keep more positive thoughts and continue with my kegals...

God Bless!

Ray
pasayten
 
Age 59 y/o
Last 3-4 years of annual general health checkups - PSA 5-6 but Free PSA Ratio 21-24%, suggesting "benign" so I did not seek immediate followup urologist referral
3/7/2007 - Went to urologist -No DRE abnormalities but scheduled screening biopsy
3/13/2007 - 12 point biopsy - Left OK  Right Core Gleason 3+3
Consisting of single less than 1mm focus at tip of 1 core. Diagnosed as T1c
4/24/2007 - DaVinci performed at Virginia Mason hospital in Seattle
5/2/2007 - Catheter Out! Got copy of pathology report:
Gleason 6  T2c Nx Mx   approx 20% of prostate involved
Positive margin, but 2 places where a focal point of only 2 cells were touching edge, the right apex and right posterior. Perineural Invasion present. Seminal Vesicle and Lymphatic/Vascular not identified. Doctor was not concerned about that at all and Final Diognosis of T2c "suggests" organ confined.  Stats for no re-occurance are 96% for 5 years and 95% for 7 years. No further treatment other than PSA watch.
 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1464
   Posted 5/10/2007 3:30 PM (GMT -6)   
Hey Bill,

You have lots of company in the "drats - I'm still leaking" department. Like everything about PCa it takes time and patience. This cancer grows slowly (usually) and it seems that we recover slowly. Its not like a hernia or appendectomy where after a specified period of time we are all well. Everybody that has PCa seems to have different recovery experiences and yet we do share so many common characteristics. Continence and potency seem to be the main areas where we differ. Give it time. Our friend KW is a great example of the patience that we need.

Like Dickie V. said, "Don't give up - don't ever give up."

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  T level - 48  Restarted T therapy.
Next PSA on 7/18/07.
 
 "I have cancer but cancer does not have me."

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