Anyone have incontinence improve after one year?

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nankie
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/27/2009 2:36 PM (GMT -6)   
My (athletic, 62 yr old) husband had a DaVinci RP one year ago. He is very discouraged, as he is still incontinent. It has improved a lot over the year, but he still needs pads during the day and he is still quite wet when he exercises vigorously (martial arts), which he does often. Just wondered if anyone has experienced or knows of anyone who has improved beyond the one year mark. I heard of one doctor who told a friend that incontinence doesn't really improve after 6 months, which of course, was quite discouraging for us to hear. My husband really does not want to have any more surgery. Thanks for any input.

(Fortunately, his numbers have all been good, so that is not an issue, and his ED is starting to improve a little, so the biggest problem right now is the incontinence.)

jerseycity
Regular Member


Date Joined Nov 2008
Total Posts : 123
   Posted 9/27/2009 2:59 PM (GMT -6)   
I am at one year and  also still incontinent. I only need 1 pad a day, a 2nd when I run or exercise. I think you can still get better after this point. Someone posted not to long ago that at the 2 year mark it finally dried up. I think it depends alot on activity level during day. I am very active in a service job and run and lift 4 times a week. I just turned 64. All my numbers are good but I long for the day when I do not have to  strap it on everyday. I've noticed a slight improvement just lately. Let's hope we both keep progressing in a positive manner.
 
Carry On.

 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.
 3,6,9 month psa <0.04
still use 1 pad per day
 
Walked thru the darkness on the edge of town.


nankie
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/27/2009 7:29 PM (GMT -6)   
Thank you, jerseycity, that is a bit more encouraging to hear.

I looked back and saw a thread about how long it takes until people become continent - it is amazing the wide range - though I guess we are definitely on the long side. I wish you continued improvement!

Jake T
Regular Member


Date Joined Mar 2009
Total Posts : 44
   Posted 9/27/2009 7:39 PM (GMT -6)   
Hi, i know how frustrating incontinence can be, i had my surgery 5 months ago and still need 1 pad a day 1 at night, some days it is better than others. i was told that incontinence could take from 6- 18 months. As long as it is getting better, you will get there one day, good luck, regards Jake

Age 56 > DRE 12/22/08 > PSA 3.4 on Jan 09 > PSA 3.8 on Feb 09 > Biopsy 3/9/09 3 out of 12 positive > Gleason 7 > cat scan neg > divinci robotic surgery 4/23/09 at Mount Sinai NY > Dr. Samadi > Chief Division of Robotics > both nerves spared > margins and nodes clear > catheter out in 7days 4/30/09 > 6 week post surgery PSA 0.01 on 6/ 09/09 > incontinence (getting better) started bio feedback  8/23/09    1-pad a day 1 @ night 

 

 


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2457
   Posted 9/27/2009 8:15 PM (GMT -6)   
nankie,
I was 100% dry at night after one week but started with 2 pads during the day, that changed to one pad after 2 months and the a thinner pad after 3 months. At 4 1/2 months I was continent as long as I didn't do too much physical activity. Swingin a golf club used to cause a leak so I wore a pad whenever I played golf. Now after 7 months I still need a light liner just as a precaution when I play golf. So you can see that there is a progression of getting better with time.
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


MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 9/27/2009 10:37 PM (GMT -6)   
You may want him to try going pad free during non-exercise periods during the day. My dr had me do that saying that as long as I maintained the pad security blanket I would continue to leak. Sure enough when my mind knew there was no protection there and it had to hold on its own 100% it did

During exercise is going to take more time but once he is pad free during regular periods, he will "learn" to subconsciously hold during all times
Stats:
Age: 52
PSA (2008)=1.9
Biopsy on Jan 09, 2009
One (1) out of twelve (12) cores was positive, plus external nodule found
Gleason Score = 3+3
Surgery (Da Vinci, robotic prostatectomy): 4/7/09
Removed Catheter: 04/19/09
100% bladder control - Pad free 7/09
PSA 7/09 undetectable, under .0


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 9/28/2009 8:14 PM (GMT -6)   
I'm just past the one year mark, since my da Vinci procedure. At my recent anniversary check-up my Urologist/Surgeon scolded me for still being on one pad a day and he said I was still dripping because I wasn't trying hard enough, that I'd resigned myself to being content with the pad - and that I'd given up. He's probably right, and I'm going to try harder. My Urologist is a university professor and directs one of the many federally-funded research projects which follow prostate cancer patients and his comments are drawn from a wide-body of statistics. Of course, not all of us experience the same things, we have different histories, our surgeries are not exactly the same, age differences, etc., etc.

Age:  60 (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 (1/2 light pads per day)

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; 4/09: 0.0; 9/09: 0.0

 


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 9/28/2009 8:43 PM (GMT -6)   
I totally agree with MrGimpy. I was on a one pad a day trajectory for several months. Then at about 13 months I saw my uro and he asked me what would happen if I went without pad. I did not know, but I tried. I was damp for a few days (not really wet). Then I became dry. I learned to sense small leaks comming and how to control them. I am now dry even when excercising. I spring a small leak on a rare occasion, but with time it happens less and less. I am now 16 months post surgery.

So, don't loose heart. It can be very frustrating, but it gets better even after a year.

Best of luck,

Greg

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, 7/23/2009-<0.05, T<10, IMRT to start mid-Aug


nankie
New Member


Date Joined Sep 2009
Total Posts : 3
   Posted 9/29/2009 10:05 AM (GMT -6)   
Thank you all for the very helpful responses. I've shown them to my husband, and he will try the advice to wean himself from his "security blanket" and see how that goes. Thanks again!

Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 9/29/2009 10:40 AM (GMT -6)   
My father JUST stopped needing pads almost two years after his surgery. Granted, he also had adjuvant RT following his surgery, so his recovery time was most likely a little slower because of that, but I have heard so many people say after a certain time period you won't heal anymore and he is living proof that it can happen. A few months ago, he was at a friend's bbq and leaked and left early and I was so devastated for him. He has always been very athletic, loves to ride motorcycles etc. and out of no where, he stopped needing pads and has been dry for almost a month. So tell your hubby to hold onto hope.
Father's Age DX 62 (now 64)
Original Gleason 3+4=7, Post-Op Gleason- 4+3=7,
DaVinci Surgery Aug 31, 2007
Focally Positive Right Margin, One positive node. T3a N1 M0.
Bone Scan/CT Negative (Sept. 10, 2007)
Oct. 17 PSA 0.07
Nov. 13 PSA 0.05
Casodex adm. Nov 07, Lupron beg. Dec 03, 2007 2 yrs
Radiation March 03-April 22, 2008- 8 weeks 5x a week
July 2, 08 PSA <.02
Oct. 10, 08 PSA <.02
Praying for a cured dad.

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