Newbie seeking continence information (or reassurance)

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Bill_Houghton
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/18/2009 3:09 PM (GMT -7)   
I had the catheter in for nine days, and am now almost three weeks out from its removal (and was I EVER glad to see that thing leave!). I was at Stage 1 continence (lying down/sitting) immediately, and improved on Stage 2 (standing and walking continence) fairly steadily at first, then slid back, then improved after I went back on ibuprofen last week, then slid back again. At this point, I'm using just one pad/day, but can't walk for more than two-three minutes without needing to pee, and then get into a cycle of needing to pee every few seconds, it seems like, even when what emits is just a drop or two.

I've been doing my Kegels, though I realized today that I wasn't quite doing them right, up to 200 quick repetitions/day, and will be working out a different cycle now that I realize I should be doing both slow reps (holding the muscle for 5 seconds at a time) and quick ones.

I'd graduated from working life before I got my diagnosis, so I can concentrate on getting better, and am getting out for errands, but nothing that includes long walks. I can generally stand still for a decent period, do the household chores (take out trash, clean the kitty litter, etc.).

This walking thing is driving me batty, though, and I feel like I'm not improving. Is what I'm experiencing normal?

I sure wish I'd found this place before the surgery...

Bill_Houghton
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 2/18/2009 3:12 PM (GMT -7)   
I clearly haven't set up my profile right...

Details:
age 60 at diagnosis, surgery on Inauguration Day (January 20, 2009)
Gleason 3+3 before surgery, 4+3 from pathology, T2a
tumor growing into but not through prostate wall
Nerve-sparing robotic laparoscopic prostatectomy
Surgeon: Peter Carroll at University of California, San Francisco

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/18/2009 3:45 PM (GMT -7)   
Bill, welcome to HW. To set up your signature, click Control Panel, then select 'edit profile' then scroll down to fill in the sig. info, save that and you got it.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
16 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 2/18/2009 4:34 PM (GMT -7)   
Hello and welcome here, Bill. Every man's incontinence journey is so different. Some are quicker to dry, some are slower, many are right in between. Sounds like you are making more progress than you give yourself credit. Hope you stick around and join in.

David in SC
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
 
 


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 2/18/2009 8:32 PM (GMT -7)   
Just hang in there and keep workin your kegeals. Odds are you will improve in the normal time frame. If not, all is not lost. There are other options if you have to go that route.
Good Luck,
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  


coxjajb
Regular Member


Date Joined Nov 2008
Total Posts : 184
   Posted 2/18/2009 9:01 PM (GMT -7)   
Bill, I went through cycles where I felt like I needed to urinate minutes after I just went. Over time, that improved. I also had trouble controlling the dribbles after urinating. I found information in this link helpful to address that.

www.continence-foundation.org.uk/symptoms-and-treatments/overflow-incontinence.php#3
Age 51, (50 at DX)
Pre - Op PSA, 4.3
Gleason 3+4=7
Stage T1C
da Vinci Prostatectomy 8/1/08
No issues with incontinence since day 1 after catheter removal
ED, need a little help from Levitra
First post op PSA 11/11/08, 0.00
Second post op PSA 2/10/09, 0.00


RBinCountry
Regular Member


Date Joined Apr 2008
Total Posts : 270
   Posted 2/18/2009 10:30 PM (GMT -7)   
Bill,
I am not sure any of us are what you call the norm. All any of us have is our own experience. I think I was about where you are at 3 weeks. The urge to go left, but the slight dribbling here and there when walking, or straining remains with me even to this day (9 months out). I am as near to being dry as I can be but still have those moments. I have gotten use to wearing a pad just for that little protection. With me there is no danger of a waterfall, but the ocassional dribble still continues.

I am suggesting that you are on your way to recovery, but do not necessarily think it will happen overnight. I thought when I was around 12 weeks out I would be back to where I was pre-surgery, and it just hasn't happened. I have read of some that were continent from the beginning as Coxjajb above, but there are also those of us who had to improve at a slower rate. Blessings.

RB
Age 61 (now 62)
Original data - pre-operation
PSA: 5.1
T1C clinical diagnosis, Needle biopsy - 10 cores, Gleason 7 = 3+4 in 1 core (40%), 7 cores Gleason 6 = 3+3 ranging from 5% to 12%
All scans negative
Lupron administered 4/9/2008 for 4 months (with idea I would undergo external beam radiation followed by seed implants - then I changed my mind).
Robotic DiVinci surgery - Dr. Fagin (Austin) May 19th
Post operative - pathology
pT2c NX MX
Gleason 3+4
Margins - negative
Extraprostatic extension - negative
seminal vesicle invasion - uninvolved
1st Post PSA <.04
2nd Post PSA <.01 10/30/2008


klondiker
Regular Member


Date Joined Feb 2009
Total Posts : 43
   Posted 2/18/2009 11:00 PM (GMT -7)   
Bill, Your experience is similar to mine. One day I can do great with using 1 pad. Then I may have a three pad day. Today was a good day even after drinking a pot or two of coffee. Tomorrow I have grandkids over so I will not be sitting and will have a wet day. Hang in there.
Age - 55
2004 PSA 2.7
2008 PSA 5.8
Sept 2008 PSA 5.66
Oct 2008 PSA 6.67
Biopsy on 11/25/2008 cancer found in 10% of one core , gleason 3+3=6
open RRP done on 1/14/2008. Pathology showed 20% of prostate cancerous, gleason 3+3=6, contained in capsule
First post op PSA 2/10/09 - 0.07
As of 2/11/09 down to one or two pads per day


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 2/18/2009 11:24 PM (GMT -7)   
Still way too early to tell.
Many of the guys here have had quick success with incontenence, and still many have had a slow recovery. You might wish to take a couple days off the kegels to see that you are able to mend.

Welcome to HealingWell, you will get some great insight and probably make some friends. Peace

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 2/19/2009 7:00 AM (GMT -7)   
Bill, my husband's experiences are similar to yours and he's 11 months post op. He wears a liner during the work day but nothing during the weekend. However, when he walks in the house after work (and he only has a 20 minute commute), he runs right to the bathroom. Then, about 20 minutes later, he's back in the bathroom. After that, he calms down. We both like to walk and walking makes him want to pee and he has to work hard at control. Yet, he can play a couple of hours of tennis with little problem.

From what I am gathering from others and from our urologist, there is nothing unusual with any of this. There is a definite improvement in husband's control but he does still get frequent urges to pee. He does do Kegels and the jury is out as to whether they help ... doctor said they don't hurt and to continue doing them if they help. Doctor also said that if not doing them is better, then don't do them.

hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 2/19/2009 9:13 AM (GMT -7)   

Hi

To give a different perspective, I was dry two weeks after the catheter was removed but had a regimen. I don't know if this will help, but I walked 5 miles a day doing kegels the whole time. The walking occurred until I went back to work. I also cut out all coffee, soda, beer, etc., until I was dry. Those types of drinks have always gone through my kidneys quickly.

I would have an "accident" sometimes in the four weeks after I became dry so I wore pads for another 4 weeks but 99% of the time they were dry at the end of the day. I fly alot so that was one reason for the pads.

 


Age 60
PSA 2007 4.1
PSA 2008 10.0
Diagnosed April 2008
Biopsy: 6 of 12 cores positive
Gleason 4 + 5 = 9
CT and Bone Scan negative
Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared
Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th
pT2c
lymph nodes negative
PSA Sept 28, 2008 0.00
PSA Jan 22, 2009 0.00


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 2/19/2009 11:14 AM (GMT -7)   
hb, i did and currently doing one thing you mentioned during the month since my last catheter was out. I only drink regular water, tap water or bottled water. I don't drink any coffee, tea, juice, soda, beer, etc. My dr. said all of the above can really irratate your bladder when you are trying to go dry. I did break down and drink some Pellegrino bottled Italian mineral water, as it is not carbonated. I figure all the good flushing of just water has got to be good for my insides, and btw, I try to limit the input to a reasonable level, as I don't want to get an imbalance from too much water. I think the water regiment helps, and the jury is out with me on the kegals. I have nothing against them, have no problem doing them, but I am not convinced it really helps or hurts with going dry, least not for me.

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
 
 


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 2/19/2009 12:59 PM (GMT -7)   
What is your Urologist and/or internist telling you about this?  My Urologist told me most of his patients don't see much improvement until the 3 to 6 month post-op period, and that's what's happening with me.  about the 3-month point I went from 8-10 pads per day to 3, then down to 2 and I'm almost at just one per day.    I don't know if I'll be one of the guys who becomes completely dry, but, at least for the moment, I'm managing well with what I have to do.

Age:  59 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (getting better, though)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0

 


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 2/20/2009 7:55 PM (GMT -7)   
Bill:

As my doctor said, you are one month into a ONE YEAR healing process. I felt like I was a mess for almost 2 months after surgery. I am still on one pad a day after 40 weeks, and I STILL feel like I am making progress in the incontinence and ED areas. At times, the frustration can be overwhelming, but just hang in there. A lot of guys experience a sudden, dramatic improvement between 10 and 20 weeks - sometimes all the way to dry. It sounds like you are really working at it, so with some luck, I would think success would just be a matter of time. What you are going thru is completely normal.

Good luck!
kcragman
Age: 53; 52 at DX
March 2006: PSA 2.5
Dec 2007: PSA taken for insurance application. I did not see the results until late
Jan '08 - after I was rejected. Their lab said PSA 4.5.
Feb 2008: PSA 3.7.
March 2008: Biopsy. Gleason 7 (4+3) 12 cores taken. 5 on the left side were
cancerous and the 6th was suspect.
May 5, 2008: Da Vinci robotic laparoscopy at GW Hospital, Washington DC.

Post op: Gleason 9 (4+5). 15% of prostate involved. Stage: pT3a. Negative margins. Lymph node and nerve samples taken, and appeared to be cancer free.

July 2008: PSA at 7 weeks was undetectable.
August 2008: PSA at 14 weeks (3 months) was undetectable.
Nov 2008: PSA at 6 months was undetectable.
Feb 2009: PSA at 9 months was undetectable.


Bill_Houghton
New Member


Date Joined Feb 2009
Total Posts : 8
   Posted 3/3/2009 10:54 AM (GMT -7)   
Update: I went back and forth for quite a while, trying things that seemed to help for a few days and then not. Last week, my primary care doctor ordered a urine culture, to see if I had an infection, and also sent me out for Pyridium (brand name), for which the active ingredient is phenazopyridine hydrochloride. This is for "urinary pain relief." My drug store didn't have that brand; I was steered to Azo, and have since found a generic that's a lot cheaper. They all seem to be about 95 mg. It makes you pee day-glo orange (which led to some suggestions from my sweetie about the frequency of toilet flushing - we tend to flush infrequently for water-saving), but wow what a difference! In one day, I was able to walk half a mile (including a ten-minute stop at an estate sale), and, even then, the need to pee was not as urgent as it had been. I'd had a low-level abdominal heaviness, which I'd ascribed to gas, although it was closer to the front of the abdomen than I commonly feel for gas - the medicine took it away in an hour.

So, I guess I've had an inflamed bladder or urinary system, which the Azo calmed down. The package says not to take it for more than two days without talking with a doctor; my doc had recommended four, and I cheated slightly by about half a day, continuing to take it until we got the urine culture results back - negative on the infection. I've stopped now, on a Tuesday, and am waiting to see if symptoms recur. If they do, I'll be on the phone agitating for a referral to the urologist who did my original diagnosis, to see if he can figure out what's going on; and back on the generic Azo until I get there.

I'm still leaking slightly when I walk for extended distances, like the 1/2 mile to the downtown of our little town, but I can appreciate that that's something to get over more slowly; and I'm at one pad/day, six weeks out, and that one only damp when I change it, not wet. So, general progress is good, if this urinary frequency dragon's been slain.
Age 60 at diagnosis, robotic laparoscopy January 20, 2009 at Univ. of California San Francisco
Gleason 4+3 (from pathology), T2A, tumor growing into wall but not extending beyond
Last pre-surgery PSA 4.4

Post Edited (Bill Houghton) : 3/3/2009 11:03:33 AM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25354
   Posted 3/3/2009 11:10 AM (GMT -7)   
Pyridium is good stuff, also good if you have any burning while peeing that isnt related to a UTI. I have been on it twice, both times, my dr. gave me plenty of free samples for the short time you are on it. On the orange color, it will stain anything real bad, i.e. clothing, the floor, and have even read that it can stain contact lens if you wear them under some circumstances. Glad you are doing better.

David in SC
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
 
 


jerseycity
Regular Member


Date Joined Nov 2008
Total Posts : 123
   Posted 3/4/2009 5:27 PM (GMT -7)   
one pad a day at 6 weeks is awesome. You may want to consider having a biofeed back done. This shows if you are doing Kegels correctly. I have insurance so my out of pocket was only $55, consider it.

 3-17- 8 went to Bruce Springsteen concert , great time
3-18-8 routine exam
3-19 doctor called said psa was elevated
what's a psa?
referred to Uro, had several more blood tests.
PSA steady at 4.75
biopsy  June 08 , 12 cores, 4 on left confirmed , right clear
gleason 3 + 3 T1c
research time.
decieded on open RP, Head of Uro  is my Doctor
Surgery done 10-1-8 by Dr See at Frodoret Hospital in Milwaukee
Cathater out 10-13 no problems
Post op,  organ confined, gleason up to 4 + 3, all clear margins
T2c 20% volume, very good outcome I feel
Incontinent and ED.  Time will tell, was told all nerves  saved.
back to work 11-5-8.
 
Rich man in a poor mans shirt.


justus1292
Regular Member


Date Joined Feb 2009
Total Posts : 63
   Posted 3/25/2009 10:54 AM (GMT -7)   
scool  My uro said the kagels wouldn't do anything, but I ignored in anyway.  I did notice a trend though.  The kagels you do when you orgasm are so much stronger and harder than any exercise; and I noticed my incontinance got better faster by having more sex........with our without the wifey.
 
Good luck.
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