Describe Incontinence

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compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 12/9/2009 9:22 PM (GMT -6)   
OK, I know what it means. But what does it feel like? Do you know that you are peeing? Do you feel it coming beforehand. Is it like you really have to go real bad and you just can't hold it in? Or is it like you are paralyzed down there and have no way to even try and stop it?
 
I'm just very curious and I figure we can ask anything here. Besides, I could soon be in those shoes (along with the pee!)
 
Mel
63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4269
   Posted 12/9/2009 9:32 PM (GMT -6)   
Incontinence: Inability to control Urinary functions. Standard varies from "no Pads, No Leaks" to a couple of pads a day.

Urgency: The need to go "right now"

Frequency: The need to urinate several times within a short time period, An hour or 2.

Constriction: Weak stream are inability to generate a stream.

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


Herophilus
Veteran Member


Date Joined Sep 2009
Total Posts : 664
   Posted 12/9/2009 9:43 PM (GMT -6)   

I took my foley cath out on the morning of day 9. After I removed it I was totally incontinent for the first hour or two. I was just a dripper. I could not stop anything, drip, drip, drip... I was horrified! After that period however I slowly was able to build volume and could actually make a decent attempt at normal urination (for us country folks that’s off the back porch) but volume was very low and had trouble completely stopping. However in the next several hours things got much more interesting. I would feel the need and only go a small amount. I finally figured out that I went in with a normal bladder and came out with a compact size. Now, just a week or so past the one month mark I’m usually with out a pad unless I’m at work. I only do that because I sometimes get stuck in very long meetings. Flow is becoming normal but the volume has not got back to where I was pre-op. As for as the actual feeling??? Got to think on that one.   The most important thing I did was walking.  After I ditched the foley I was up to 4 miles a day.  In the late evening I was more wet as related to the rest of the day but that didn't last very long.  Everybody is different..


Age 51, PSA 08/31/2009= 6.8, DRE Neg.
Biopsy 9/24/09 =10 of 12 positive. Gleason 6. 75% of one core.
da Vinci at Wash U, Barnes on 11/02/09
Pathology Changed Gleason to 4 + 3 = 7. Gleason 7 present in all 4 quadrants
All(4)periprostatic Lymph Nodes Negative, All(10)pelvic Lymph Nodes negative
Seminal Vesicles tumor free. No prostate extension


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 12/9/2009 10:10 PM (GMT -6)   
Mel,

Probably every man here will give you a different answer on incontinence, but it is a little of all you said at different times.

When the PA at Cleveland Clinic handed me a container and said , here hold this, I'm going to remove your catheter, he whipped it out, and I stood there, talking. My wife said, hey, you're leaking. I didn't have the container in place and had no idea I was running on the floor.

But soon, a few days, I could hold it while i was sitting or laying, but when I got up, there was no way to hold it unless I physically grabbed hold of Willie and pinched him off.

Gradually, maybe a month or so, I could get up and make it to the toilet, and only leak a pad or two a day. I could feel the leak, but just couldn't stop it. For a while, I bought a clamp which actually pinched Willie so I could function at work, without great embarassment, or attend social occasions.

Now, after 8 months, I can go all weekend, and in the evenings without wearing a pad. Coughing or sneezing, or lifting heavy objects can cause a slight squirt, but not enough to soak my pants.

I still wear a pad during the day for security, but I will wear one less and less.

If it never got any better for me, I am OK. With my Gleason 9, I am very pleased with my results thus far. If the cost of good results is a squirt in the pants once in a while, then I have no complaints.

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injections


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 12/9/2009 11:03 PM (GMT -6)   
For me I could sit or lay down and retain urine. Once I stood up I would normally feel a gush at first. Then it would constantly dribble out as my body produced urine. If I bent over, coughed, laughed, any kind of sudden movement I would also get a squirt.
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
     Dec. 2006 – Oct. 2008 Cystoscope, Two Collagen injections,Second Opinion   
    Consultation for Incontinance at OU Medical Center, Bio-Feedback       
    training, Chiropractic, Accupuncture , AdVance Male Sling, Two More Collagen 
    injections, AUS Installed and Activated (Dr. Morey at UT Southwestern Dallas TX)
    All to try to resolve incontinence (using 6-8 Depends Guards a day)

    To Date All PSA's 0.00.

   http://www.healingwell.com/community/default.aspx?f=35&m=721171

    http://www.healingwell.com/community/default.aspx?f=35&m=978691


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 12/10/2009 12:55 AM (GMT -6)   

Wow... thanks for your answers. It is clearly...not clear cut!

 

Mel


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.
 
History of BPH/prostatitis.
 
PCA-3 test: 75.9 (bad news, guaranteeing I have to do....):
 
Biopsy on 11/30/09
 
Biopsy Report—Prostate Cancer

5 out of 12 positive

Gleason 4+3. More specifically:

2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:

2 cores are 4+3 (5%)--

1 core 3+4 (30%)

no peri-neural invasion

prostate is 45 grams

Stage: T1C

 Latest: Have set up an appointment at Umich with surgeon, radiation guy, general medical oncologist on Monday, 12/14. Trying to also set up appointment with Dr. Menon at Ford Hospital. Looking at another reading of the slides.


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 12/10/2009 1:59 AM (GMT -6)   
Mel,
Just on another angle surrounding your question, even though I did not think it possible AT ALL at the time, my husband was one of the lucky few who did not have a drip at all. Not from the time of catheter removal, and no problems to now, although he does experience urgency and makes sure that he can go when he needs to. He has never had an accident or worn any pads at all - apart from the trip home from hospital but he didn't need it. So far (2.9 years out), he has not had stress incontience in any way either. He was very lucky but this is the truth so I know it is possible for some to have no incontinence at all. This was one of the main reasons we chose our Specialist and he was able to provide research data and statistics on his own 1500 RPs. It was only guesswork even so before as he said he had very high complete continence rates, and as it turned out, my hubby is now one of his statistics too. Just sharing this so that you don't automatically assume that incontinence is always a part of it. I thought it was too, but it isn't always. Good luck and hope you do not mind me responding for your further information on this topic, just in case you had not heard of this before.
Creed_three (Lana) - with husband "CJ" now aged 52 yrs (49 years at diagnosis).
PSA (2002) 2.1. (2006) 3.5.  1 x 5% core of 12 positive at biopsy. Open Radical Prostatectomy with nerve sparing April 2007 Sydney, Australia. Gleeson 3 + 4 = 7. 2 small multifocal lesions. Contained. Undetectable <.1 PSA since: June 2007-0.01, Oct 2007-0.02, April 2008-0.02: Oct 2008-0.03, Nov, 2008-0.02, April 2009-0.03. Next PSA April 2010.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3742
   Posted 12/10/2009 4:57 PM (GMT -6)   
Here's how I define it:
Having to wear pee pads and having them hold more than 20 ml of pee at the end of the day.

Yep, I weigh my pee pads. I have a diaper pail in the bathroom lined with plastic bag. After I take my morning shower, I carry the bag into the kitchen and weigh it on the scale. Then I throw the bag into the garage trash bin. I reline the diaper pail and I'm ready for the next data point. When I sit or lay down the fluid builds up. I kegel before getting up but it still dribbles out. The only thing I feel is a pleasantly warm sensation on my scrotum. I'm at about 450 ml/day now. A looong way to go.

How does it feel? Kegeling as hard as I can, I get drip, drip, drip about 2 Hz. If I relax for a millisecond, the drip rate increases. And if I sneeze or blow my nose it comes out with as much thrust as a LEM RCS thruster.

10 Input Pee pad mass
20 If Pee pad mass < 20ml Go to 40
30 Incontinent Go to 10
40 Start ED therapy
50 End

Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/27 2 months: Still 3 pads per day.
11/14 4 month: Still 3 pads per day. 420ml/day, 91 um leak. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.

Post Edited (Worried Guy) : 12/10/2009 3:07:35 PM (GMT-7)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 12/10/2009 5:25 PM (GMT -6)   
Mel,

My story is still a different one. The range of experiences on what you asked is immense.

After being on catheters for 63 days after surgery, when it finally came out, I was a leaker if I tried to stand up. As long as I lie down or sat down, not a problem. I used a Depends Guard in the day and a Depends pullup at night. I lost a lot of sleep the first week, it wasnt that I was wetting that much, I worried to death about it, so I went frequently. I did not do Kegals, tried them a few times, but that wasn't for me. Being in the dead of winter then, wasn't real motivated to walk a lot either.

At one month after cath was removed, I considered myself 100% dry. During that month, I may have slightly wet 3-6 pads, never a pull up at night. Again, it was more in my head than in my body. My surgeon thinks all the extra cath time may have given my body more of a chance to heal up down there than the average man gets after surgery, which is more in the 7-14 days of cath time.

But every "body" is different. Prior to PC, never had any urinary issues, could hold all day, had strong flow, etc.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out  38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - began IMRT SRT - 39 sess/72 gys ,cath #8 33 days, Cath #9 in 35 days, 12/7/9 - Cath #10 in place


O Buddy Boy
Regular Member


Date Joined Oct 2009
Total Posts : 106
   Posted 12/10/2009 6:47 PM (GMT -6)   
Every once and a while I feel a little dribble. I'll feel it coming out of my bladder. I can pinch it off, but usually a drop or two gets free.

I have deep bucket seats in my car. The edge of my seat gives my bladder a little goose every time I get out and I'll get a few drops out then.

I'm lifting weights again and that doesn't seem to affect it. Shoveled snow this morning and no leaks.

Wife is a Uro nurse. She doesn't mention names (cant'/won't) but does speak of instances.

She is not a fan of RT because she's seen a lot of bad cases. Usually once she mentions RT I'll usually hear about Hiroshima and Chernobyl shortly after. If she gets really wound up I'll also hear about the three-eyed fish on The Simpsons, plus Godzilla and Night of the Living Dead.

Anyway R/T patient comes in for treatment and leaves a huge puddle. He didn't even feel himself leak. She says once R/T gets you it's gone.

You asked about incontinence in general. With R/T there is also the risk of bowel incontinence. Wife talks about that, too. If you want to know what that feels like ask a ten-month old right after he gets that big smile on his face and just before the room stinks.

So, I guess it varies.

OBB
55 yo
Dx:9/29/09
DRE: Susp
PSA: 3.5
Gleason: 3+4/7
6/12 Cores Positive; Sextants were 1%, 3%, 8%, 15%, 12%, 0%
RALP: 10/09/09
PATH:
Margins: Clear
Lymph Nodes: Clear
Seminal Vesicles: Clear
Gleason: No increase from biopsy 3+4/7
Some perineural and capsule invasion.
T2c,NO,MX
Incontinence: Minor. 1 light pad a day. Some days don't need it.
ED: Natural with encouragement. 20mg Cialis and pump just makes things more fun.


zachattack
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 12/10/2009 8:17 PM (GMT -6)   
Mel almost 7 months into my journey.At first I ran like a race horse now i can sleep all night ,get up and take a good healthy pee and not be wet. but if i stand up or cough I get a little squirt.It gets better day by day.take care.

Zach
age 55dx 12-2008,psa at biopsy 8.6
biopsy 12/12 gleason 3+4=7
da vinci surgery 6-09 by DR. John W. Scott (my hero)
Hospital 3 days cath 7days still leaking from cough(bad lungs)
still have ed may be the hormones.
9-09 psa 2.2 hormone inj
10-09 nuclear bone scan no results yet I will have gold markers placed 12-29-09
start rad 1-10-09
organ confined
extracapsular seminal vesicle involvement
lymph node involvement


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2461
   Posted 12/10/2009 8:45 PM (GMT -6)   
Mel,
After my catheter was removed I was dry at nigh from the get go but used 2 pads per day. I could feel leaking but couldn't stop it especially if I was walking or standing up. I was urinating more frequently and sometimes feel the need to urinate yet not much came out. This went on for 2 months after which I was using only one pad and not urinating as often. At about 4 months I ditched the pad but I still have few drops occasionally when I'm playing golf or late in the day when I cough or sneeze. I can live with that since it is not enough to wet my pants.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
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 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 12/10/2009 9:15 PM (GMT -6)   
Mel
I'll describe the first few weeks after the cath is out. For me it was a combination of undetectable leaks that just meant the pad was getting heavier an some where it was clear to me that I was peeing enough that if not for the pad, my pants would show it.

It is an amazing tribute to the human spirit that you can be standing up and giving a presentation (aka lecture) and in the middle know for sure that you have peed your pants. Yet you realize that you are the only one who knows -- and you don't have to tell!
It is like talking about n log(n) and realizing you don't have the foggiest idea what a logarithm is! You just have to cowboy on!
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 12/11/2009 1:06 PM (GMT -6)   
Mel

Ed C wrote:
After my catheter was removed I was dry at nigh from the get go but used 2 pads per day. I could feel leaking but couldn't stop it especially if I was walking or standing up. I was urinating more frequently and sometimes feel the need to urinate yet not much came out. This went on for 2 months after which I was using only one pad and not urinating as often. At about 4 months I ditched the pad but I still have few drops occasionally when I'm playing golf or late in the day when I cough or sneeze. I can live with that since it is not enough to wet my pants.

I was interested in what he wrote as, apart from not having played golf, I could have written it. So that's two of us with a similar story.
At the beginning my leaking was just a strange warm feeling, the urine just trickled slowly out of me and I couldn't stop it, it wasn't like having a pee. I just let the dribble end up in the pad and then went to the bathroom where having a pee removed what was in my bladder and stopped the leaking.
The pads I had really did absorb things too, by the time I got to the bathroom both my skin and th surface of the pad were often already dry.

Alfred

Modelshipwright
Regular Member


Date Joined May 2009
Total Posts : 215
   Posted 12/11/2009 6:44 PM (GMT -6)   
Hi Mel,

At ten weeks post op, I still leak a bit now and then. Filling the kettle does it every time and passing wind also gets a leak going. I guess this will improve with time. The cold weather here in Ontario has also increrased my trips to the toilet and there is a little more leaking going on. Still doing pelvic floor exercises.

Regards,
Bill

coxjajb
Regular Member


Date Joined Nov 2008
Total Posts : 184
   Posted 12/11/2009 7:40 PM (GMT -6)   
Compiler, I could "hold my water" as soon as the cath was removed. However, I felt the urge to urinate frequently. When I did urinate, I dribbled as I could not stop the stream. No matter how much I wiggle and dance the last few drops go down my pants. I read somewhere on the internet that after urinating, push up with two or three fingers , about one inch behind your scrotum. That will empty the urethra. That works for me and keeps me dry. Take a look at this site for a better explanation. I can't remember how to post a link that will work. You'll have to copy the link below to your browser.

http://www.continence-foundation.org.uk/symptoms-and-treatments/overflow-incontinence.php#3
Age 51
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
Mild ED. Levitra works well for me
PSA 0.00 at one year post op

Post Edited (coxjajb) : 12/11/2009 5:55:25 PM (GMT-7)

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