Long term incontinence

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Jetlagged
Regular Member


Date Joined Jul 2008
Total Posts : 29
   Posted 6/30/2009 6:04 PM (GMT -6)   
To the "longer-timers" around here...

I'll be two years out of RRP this coming December. I have been steady at needing (or at least thinking I need) one pad every 24 hours for several months now. After buying an electronic scale for my kid's pinewood derby (scouts) car, I have noted that the pad increases in weight around 5g a day, which translates to 5ml (one of the nice things about the metric system). Some of this "weight/volume" may be sweat...or so I tell myself.

Long question longer, can I expect any improvement from now on, or is this likely as good as it gets?
Robotic RP 12/07
Age 46
Pre-surgical PSA 5.02
Bone scan/Chest X-ray clear
All margins, seminal vesicles, bladder resection margin, 17 lymphs clear
3+4=7
Three Post-surgical PSA's <0.01
Forth (one year 12/08) PSA 0.01 (not less than)
Fifth (on my own initiative 2/09) PSA 0.01
Sixth PSA back down to less-than 0.01 boooyah!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 6/30/2009 7:27 PM (GMT -6)   
Pads will absorb natural sweat, but never thought about weighing it before.
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
 
 


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 6/30/2009 11:19 PM (GMT -6)   
I was at about that stage for a long time, so a week ago or so, I decided to see what happens if I toss the pads. I am dry, it does not smell, but I do see a bit of staining on my underwear. 5g is so little during the day you will likely not notice it.

Father died from poorly differentiated PCa @ 78 - normal PSA and DRE

5 biopsies over 4 years negative while PSA going from 3.8 to 28

Dx Nov 2007, age 46, PSA 29, Gleason 4+4=8

Decided to participate in clinical trial at Duke - 6 rounds of chemo (Taxotere+Avastin)

PSA prior to treatment on 1/8/2008 is 33.90, bounced on 1/31/2008 to 38.20, and down at the end of the treatment (4/24/2008) to 20.60

RRP at Duke (Dr. Moul) on 6/16/2008, Gleason downgraded 4+3=7, T3a N0MX, focal extraprostatic extension, two small positive margins

PSA undetectable for 8 months, then 2/6/2009-0.10, 4/26/2009-0.17, 5/22/2009-0.20, 6/11/2009-0.27

Salvage IMRT + 6 Months ADT: Casodex started 6/12/2009, Lupron 6/22/2009, PSA 6/25/2009-0.1, T=516, IMRT to start mid-Aug


dawgfan
Regular Member


Date Joined Aug 2006
Total Posts : 148
   Posted 7/1/2009 10:29 AM (GMT -6)   
FWIW, I was told by one of my uro's that if you leak after 6 months, you will not improve. I let it go for over 2.5 years. I don't think that applies to everyone because we all heal at different rates. I tried to go padless briefly, but leakage drove me back to my 1 pad-a-day habit. I remember one little squirt that happened while in a store and I had to pull my shirttail out to cover up till I got home. Miserable feeling.
DX 8/24/06, Gleason 6, PSA 3.32, stage T1C
age 48 at the time, da Vinci on 10/20/06
Last PSA was ZERO
6/16/09 AdVance Sling installed
 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/1/2009 11:25 AM (GMT -6)   
Geebra, I switched to the premium extra thick Hanes (Michael Jordan?) black underwear for that very reason, that once in a while little stain. 
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
21 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 7/1/2009 12:25 PM (GMT -6)   
I have wondered about the is it sweat or urine issue. I know that urine fluoresces under black light (UV) They sell black lights to detect pet stains and pet owners report that human urine reacts even better. One source suggested that this was much less true of sweat. Does anybody have any further information?
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
Pathology report. Lymph nodes negative, 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 unpredictable leakage day/1 pad.


RonE
New Member


Date Joined May 2009
Total Posts : 12
   Posted 7/1/2009 9:19 PM (GMT -6)   
Although I was still leaking, I decided to stop using pads. My thought process was that the pads provided an excuse for me to not work hard at controlling my incontinence. In my case, the ploy worked well. I still have stress incontinence when lifting heavy objects, but day-to-day activities are no longer a problem. I just try to remember to go to the bathroom whenever the opportunity arises. Of course, your mileage may vary. Godspeed!
Oct 2007 - Family doctor checkup at age 53
PSA 2.4, ~10% increase from 6 months previous
Nov 2007 - Consult with urologist
Biopsy 1/12 cores positive 1% Gleason 6=3+3
Jan 2008 - DaVinci radical prostatectomy
Hospital stay of 3 days, JP drain in 1 week and catheter 10 days
Gleason 7=3+4 with early foci extracapular extension
Surgical margins clear, prostate 5x4x4cm & 43g, involvement 3%
Mar 2009 - Consult with radiation oncologist about adjuvant radiation therapy
Post surgery PSA undetectable thru Jun 2009


kcragman
Regular Member


Date Joined May 2008
Total Posts : 240
   Posted 7/2/2009 12:23 PM (GMT -6)   
JetLagged:

If you query my name, you will see that I went thru extensive pad weighing about 9-10 months ago (?). I am closing in on 14 months post op and I wear one light pad a day. I still have random squirts on a daily basis - my pads usually indicate 5-10 grams. I just cannot shut it down completely because they are so random. I sweat a lot, too. But usually there is some discoloration in the pad that indicates I have leaked a bit. And I HATE the feel of damp undies.

So, I'm doing one pad a day, and if I never get any better, so be it.

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.
May 2009: PSA at 12 months was undectable.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 7/2/2009 1:12 PM (GMT -6)   
I think that some of us, myself included, forget that we may have had little tinkle drips and marks on our underwear even pre-treatment/pre-surgery, not uncommon at all. James C. is right on, wearing dark underwear makes you feel less self conscious about the whole subject, and it helps to wear briefs as opposed to boxers, the boxers would allow any mini leak or drip to run down your leg and onto your pants a little easier in my opinion. And for any of the men that still want to wear a single light pad for long term, if it gives you confidence, then do it, many women have to do that all their lives after childbirth, etc, and don't think nothing about it. Do whatever works best for you.
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
 
 


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 7/3/2009 7:37 PM (GMT -6)   
You are right David.....Women wear light days pads all the time.....I havent been posting much this summer, Pete has been doing well, and we have been taking some family trips outwest.....,, but also dont forget about the AUS....Artificial sphincter operation.....for men that have high incontinence. Pete had one put in last Sept....not a complete panacea, but it is much better than being sopping wet all the time. He uses three pads a day....The doctor said that a complete success is one pad a day.....Di
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
AUS improving..only 2 pads a day and one at night
Complete hip replacement surgery Dr. Waters Gainesville, FL 1/9/09
Hip replacement total success..pain gone!!
PSA .7 2/10/09
waiting for new PSA 7/09


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25382
   Posted 7/3/2009 9:48 PM (GMT -6)   
Good to hear from you Diane, and about Pete. Think of you two often. Glad you are able to do the family trips. Yes, with his AUS, it has to make Pete's quality of life better, and it is a big improvement on how life was for him before that. I am happy to hear that.

David in SC
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
 
 

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