Incontinence after 14 months

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Jake T
Regular Member


Date Joined Mar 2009
Total Posts : 44
   Posted 6/24/2010 9:24 PM (GMT -6)   
  I had my surgery 14 months ago, went for bio feedback 10 months ago, and the first half of the day i can remain dry, i do limit my intake of fluids to 1/2 cup of decaf coffee and one 12 oz bottle of water through out the day. By 3:00 or 4:00 i start with a minor leak for the rest of the day. My uro said it can take up to 18 months and be happy you are cancer free, and i am, but just wondering if anyone did regain full continence after a year + months. Thanks in advance for any feedback and like i said i know this is a very minor issue.

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 4/30/09 > 6th week post surgery PSA on 6/09/09 0.01 >  started bio feedback  for incontinence 8/23/09    1-pad a day>1 at night>  recovered from ED about 70% without meds.  PSA on 9/22/09  0.01 >PSA on 12/09 0.01> PSA on 3/2010  0.04    Dry for the first 6 hours a day > then some minor leaking

 


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/24/2010 9:27 PM (GMT -6)   
Jake, still dealing with incontinence 14 months later is not a minor issue. Its an important issue, sorry your doctor was so casual about it with you, that would have pissed me off to start. If that is really all the liquids you are consuming in a day, then you are dehydrating yourself, which can be dangerous. I understand the logic, less intake, less leaking, but your body needs more than you are giving it.

Hopefully you can get some better advice from some of the men here that have dealt with longer term incontinence. Good luck.

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, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
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 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 6/25/2010 2:57 AM (GMT -6)   
Hey Jake,

At 11 months that is my pattern too. Except I start leaking about 2-3 hours after I get up.
So far the only person I know who suddenly got dry after a year was "pa69" . If I recall it happened at 15 months.

Do you keep track of how much you leak by weighing your daily pads? It is helpful for tracking your improvement. I do it daily (but I'm a mental case). A weekly check is sufficient.

Like you, I also control my liquid intake throughout the day. Since I am dry at night I drink a full 12-16 oz before bed. I figure as long as my pee is the right color I am hydrated enough.

I am still improving but very slowly.
I'll be watching this question with interest to see if anyone else jumps in.

Jeff
Married 34 years, DX Age 56. First routine PSA test on April 8, 09: 17.8. Start 2 weeks of Cipro to rule out protatitis. May '09 PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, 20%-70%, Gleason 3+4=7, 3+3=6. Bone and C/T scans neg.
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.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next See Uro 1/22/10 Trimix #1. Try 0.08- 25%, 0.12-25%, 2/26/10 try 0.16 First Success! 90%.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day. Try controlling fluids.
12/11/09 5 months: 3 pads per day, 400-450ml/day
02/26/10 7 months: 3 pads but leak is now 320 ml (5 day avg.)
03/22/10 8 months: 3 pads per day, 280 ml/day (5 day avg.) PT says all muscles are tight and working properly. There must be another issue. Uro mtg 4/23.
5/22/10 10 months: 2 pads per day, 190 ml/day Scope on June 15 Short sphincter
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05, 4/14 9 months - 0.04 and <0.01 with ECLIA.


Jake T
Regular Member


Date Joined Mar 2009
Total Posts : 44
   Posted 6/25/2010 8:04 AM (GMT -6)   
Hey David and Jeff thanks for the reply, Jeff, i don't keep track of the weight, i try to track when the leaking starts, it is getting later but very slowly, i noticed also when i am home and not working i am much drier, where i can go without a liner, but still need light pad at night, well thanks again and good luck to you guys, 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 4/30/09 > 6th week post surgery PSA on 6/09/09 0.01 >  started bio feedback  for incontinence 8/23/09    1-pad a day>1 at night>  recovered from ED about 70% without meds.  PSA on 9/22/09  0.01 >PSA on 12/09 0.01> PSA on 3/2010  0.04    Dry for the first 6 hours a day > then some minor leaking

 


RHC Jr.
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted 6/25/2010 1:11 PM (GMT -6)   

Jake:

I, too, an an unwilling member of the incontinent club.  I am 16 mos. past robotic surgery, and am totally incontinent. Unlike you, I do not attempt to limit my intake of fluids. I live and play tennis and golf in the heat of SW Florida, and such fluid restriction would not be an advisable strategy. In fact, I consume large amount of fluids daily (mostly water - good; too many sugary sodas - not so healthy, but tasty).

Sporadically, I do keep a voiding diary. I beleive that it does have some limited value. However, what goes in must come out. Since I consume more fluids than many, my output will be much higher. When keeping the diary, I do not attempt to weigh my diapers or pads (I use belted undergarments, without the belt, as my pads, worn inside my diapers).  But, on the days when I do wear my AFEX condom catheter, I do get precise output readings.

BTW, I do like your attitude of mentally minimizing our incontinence problem. I try to do the same by continually thinking of those who are in a worse position. It helps me to cope, and inspires me to search for a solution.

As I have said in prior posts, I currently am lokking for the "magic bullet" for my incontinence solution. The first clinical trials in the USA (Beaumont Hosp. in Royal Oak, MI. and Vanderbilt Univ. in Nashville, TN.) currently are in progress using autologous muscle-derived stem cells to cure or ease urinary incontinence. These clinical trials currently are for females only. When these clinical trials turn to the next phase (for post-prostatectomy males), I hope to enroll. I am crossing my fingers for late 2010 or early 2011.

RHC Jr.


Last PSA prior to biopsy  -  11.9
Biopsy  -  8/7/2008
Cancer findings at left lateral and left medial apex of prostate
Gleason score  -  3+3 = 6
Staging  -  T1c
Prostate size/weight  -  128 cc./ 99 grams
Bone and CT scans  -  9/12/2008  -  both clear
Age at biopsy  -  65         Health  -  Excellent (other PCa)  (Lift weights, play golf & tennis (incl. singles))
da Vinci RP surgery  -  12/15/2008 at Naples Hosp.
Surgeon  -  Dr. Wm. Figlesthaler
Hosp. Stay  -  1 night
Catheter removed  -  12/23/2008
Post-Op blood tests  -  2/2/2009, 5/7/2009,  8/12/2009 & 12/7/2009          PSA  -  undetectable
Completed 12 weeks biofeedback, coupled with electrical stimulation  
 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3743
   Posted 6/25/2010 2:07 PM (GMT -6)   
RHC Jr.
I see that you had a 99 gm prostate. Do you know if they took part of your sphincter too? Is that why you are incontinent?
If you hear anything about a trial for men, please let us all know - after you reserve your spot, of course.
Stem cells can be the magic bullet. 50 years from now our grandchildren will look back at medicine practiced today and consider it as crude as we consider the days before antibiotics.
I'm keeping my fingers (and my legs) crossed.
Keep on Kegelin'
Jeff (the leaking one)

RHC Jr.
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted 6/25/2010 3:02 PM (GMT -6)   

Worried Guy:

There is no mention in my hospital records or the records from the Dr.'s office of any removal of any portion of my sphincter.  Moreover, in our discussions, the impression was left with me that the operation was unremarkable.  BTW, I am sure that you are aware that no portion of the sphincter need be removed to have incontinence.  Trauma to the structure from the operation is sufficient.

Of course I will update this board with respect to my findings on the MDSC clinical trials.  I thank everyone who previosly shared info with me on this board. 

I don't know whether the procedure truly will be a "magic bullet", but I am hopeful.  The published results to date for women look good.  Moreover, the procedure clearly is much less invasive than the implantation of an AUS.

RHC Jr.


Last PSA prior to biopsy  -  11.9
Biopsy  -  8/7/2008
Cancer findings at left lateral and left medial apex of prostate
Gleason score  -  3+3 = 6
Staging  -  T1c
Prostate size/weight  -  128 cc./ 99 grams
Bone and CT scans  -  9/12/2008  -  both clear
Age at biopsy  -  65         Health  -  Excellent (other PCa)  (Lift weights, play golf & tennis (incl. singles))
da Vinci RP surgery  -  12/15/2008 at Naples Hosp.
Surgeon  -  Dr. Wm. Figlesthaler
Hosp. Stay  -  1 night
Catheter removed  -  12/23/2008
Post-Op blood tests  -  2/2/2009, 5/7/2009,  8/12/2009 & 12/7/2009          PSA  -  undetectable
Completed 12 weeks biofeedback, coupled with electrical stimulation  
 


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 6/25/2010 9:30 PM (GMT -6)   
Hi Jake,

I wore my last pad 15 months after surgery. I started out totally incontinent except when sitting or lying down. As soon as I got up I simply lost it all.

I'm presently three solid months without using a pad. I did notice some minor drips when I had a cold but not enough to need a pad.

ED is a separate issue. I'm presently 100 percent limp but WD40 has offered some hope there. Maybe at my age I shouldn't worry about that. The main thing is achieving continence.

Good luck to you,
Bob
Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Six PSA tests undetectable, latest April 30
Pad free beginning Mar. 18, 2010!


SPACER
Regular Member


Date Joined May 2010
Total Posts : 22
   Posted 7/2/2010 2:19 PM (GMT -6)   
To RHC Jr.

Did the electrical stim & bio feedback help you in any way?
It is not available here but I am trying electrical stim without feedback anyway. There has been no big improvement yet.
I am 9 months post RRP surgery & my continence hope is diminishing.

Thanks,
Bob

knotreel
Veteran Member


Date Joined Jan 2006
Total Posts : 654
   Posted 7/2/2010 3:23 PM (GMT -6)   
Here I am whining about be 5 mounths incontinent. It was of no little comfort to see what you guys are doing and at least there's one who won this battle, way to go pa 69. RHC Jr, how well does the AFEX system work sitting down? I have a reusable external catheter that has a blow-up cluff to hold and seal it. It works ok standing but i have to be careful how i sit as the cuff inflates unevenly and therefore does not seal that well. Almost all the time when I want to be dry and not fool around with pads, I use an adheasive type condon catheter with extensiuon tube and leg bag. Not very pretty but effective.
Most of the time during the day I am in pads and my summer time set up ( very hot and sweaty where I live) is a medium pad wrapped around my penis ( I call it burrito style) and stuck to my lower abdomin . I top this off with the panty part of some panty hose in order to help hold the thing in pointing up position. The goal here was to get the pad from between my legs and avoid rashes.
pa69 give us some encouragment, how did it happen? slowly? I am like the other guys, dry at nite and stting mostly but standing is 0!

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 6090
   Posted 7/2/2010 5:35 PM (GMT -6)   
To my knowledge, prior to the prostectemy, we have 3 sphincters, one at the bladder neck, 1 somewehre inside the prostate it self and the last on in the pelvic area. Woman only have 1 in the pelvic area and women do leak more than men, pads are not just for menstruation After the surgery we are like our better half with just the pelvic one. This is why the Kegals are so important. I did kegals prior to surgery and have a strong group of core/pelvic muscles from years of running. I was continent as soon as the catheter came out. A lot has to do with the surgeon also. I say all this to to give you hope, that with kegals and getting used to using that pelvic sphincter, I believe you will improve. exerecising the core will help also. I know you will leak as you start exercise, but you should begin. There has to be a reason, other than luck why some men have this problem and and others don't. Don't get me wrong I think luck plays a big part in PCA, ie, placement of the tumor, gleason score, though I am a firm believer that gleasons do migrate higher the longer you have pca. But consistant exercise is key to continence,IMNSHO and it is never to late to start, caveat, get doctors approval. Good luck
age 67 First psa 4/17/09 psa 8.3, 7/27/09 psa 8.1
8/12/09 biopsy 6 out of 12 pos 2-70%, rest <5% 3+3
10/19/09 open rrp U of Washington Medical Center, left bundle spared
10/30/09 catheter out. continent from the jump.
pathology- prostate confined, only thing positive was the report.everything else negative
9% of prostate affected. gleason 3+4, I suppose thats a negative
After reading pathology myself, gleason was 3+4 with tertiary 5, 2-3 foci, extensive PNI, That is a negative, but I am a positive !!
Ed an issue but keeping the blood flowing with the osbon pump
Dec 14,2009 psa 0.0 May 10 2010, psa 0.0

" Hypocrisy is vice's homage to Virtue " read it in Bartlet's book of quotation years ago stuck with me, can't remember who said it.


Mike E
Regular Member


Date Joined Oct 2009
Total Posts : 23
   Posted 7/4/2010 9:15 AM (GMT -6)   
Jeff and Everyone,

I have been absent from the forum for quite awhile, but thought I would check in. The incontinence issue is still plaguing me, too. I am now coming up on 9 months since surgery. I notice the same morning phenomenon that others are indicating. By afternoon, any added standing or walking (or working the yard!) still makes me lose control. Sometimes I can feel it happening, sometimes I can't. A glass of wine opens the flood gates! I have been beginning wonder if there is permanent damage. (I will admit that I forget about Kegels most of the time, but after reading these posts, I will redouble my efforts.) Thanks, guys!

Mike
Age 56
After several years of being treated for on and off prostatitis, my PSA stopped responding to Cipro...
PSA: 2.56 (up from 1.6 over a year and a half)
Bone Scan: negative
Biopsy: 8/21/09 6/12 plugs were positive for cancer
open RRP done at Johns Hopkins: 10/7/09
Upgraded Gleason to 4+5 = 9 (from an 8)
Tumor extent: Moderate
Margins: Positive 1 mm
Extraprostatic Extension: could not be distinguished because of incision site
No seminal vesicle or lymphatic invasion
Stage: pT2x
11/21: Incontinence- mostly dry at night, but little progress during the day, multiple pads
ED: Nothing but fleeting twinges of hope every now and then


Doting Daughter
Veteran Member


Date Joined Aug 2007
Total Posts : 1064
   Posted 7/5/2010 11:56 AM (GMT -6)   
My father quit using pads around the two year mark. It was pretty incredible how all of a sudden things just seemed to "dry up". He will have an occasional leak every now and then, but he is very active and does not limit his fluid intake. Don't lose faith, there have been a number of men that have thrown out the pads after 14 months. Best wishes!
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
Oct. 9, 09 PSA <.01 Last Lupron Shot
Praying for a cured dad.

Co-Moderator Prostate Cancer Forum


Gleason7
Regular Member


Date Joined Feb 2010
Total Posts : 111
   Posted 7/5/2010 12:24 PM (GMT -6)   
Incontinence and sphincter's.
Check this out.
http://books.google.com/books?id=IZmhwzwGyuMC&pg=PA279&lpg=PA279&dq=prostatectomy+removes+upper+sphincter&source=bl&ots=lbeo1eh0HH&sig= smilewinkgrin

RHC Jr.
Regular Member


Date Joined Feb 2009
Total Posts : 39
   Posted 7/5/2010 6:17 PM (GMT -6)   
To:  Spacer
The electrical stimulation and biofeedback was of no discernible value to me.
 
To:  Knotreel
My AFEX system generally works fine for me while seated.  But, since it works by gravity feed, the collection bag always must be lower than your penis.  In addition, your penis generally should be pointed "south"; so leaning back in a rocker usually is a bad option.
 
To:  Logoslidat
I performed kegels prior to my robotic surgery, and I was diligent about performing my kegels post operation.  I also consider myself to be an athlete, and currently play lots of tennis and golf.  However, for me, the kegels were to no avail.  I still perform a limited amount of kegels on a regular basis, even though my urologist thinks that is too late to be of any benefit.
 
Gene214, KW, Salty Clark and others all have written very nice reviews about their AUS implantations and experiences; some over 2 years.  Maybe an AUS will be in my future.  For the moment, I will continue to pursue the "magic bullet".
 
RHC Jr.
Last PSA prior to biopsy  -  11.9
Biopsy  -  8/7/2008
Cancer findings at left lateral and left medial apex of prostate
Gleason score  -  3+3 = 6
Staging  -  T1c
Prostate size/weight  -  128 cc./ 99 grams
Bone and CT scans  -  9/12/2008  -  both clear
Age at biopsy  -  65         Health  -  Excellent (other PCa)  (Lift weights, play golf & tennis (incl. singles))
da Vinci RP surgery  -  12/15/2008 at Naples Hosp.
Surgeon  -  Dr. Wm. Figlesthaler
Hosp. Stay  -  1 night
Catheter removed  -  12/23/2008
Post-Op blood tests  -  2/2/2009, 5/7/2009,  8/12/2009 & 12/7/2009          PSA  -  undetectable
Completed 12 weeks biofeedback, coupled with electrical stimulation  
 


pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 7/5/2010 9:28 PM (GMT -6)   
Hi Knotreel,
I was able to ride a bicycle when I used the Afex system but like RHC Jr. says, you must be careful to keep the bag south of the border. Certain exercises that I perform required me to relieve myself and empty the bag beforehand.

Bob
Age 70, First ever PSA 7.8 taken June 2008, Biopsy July 2008, 10 of 12 cores positive, Gleason 3+3=6
da Vinci surgery December 10, 2008, catheter removed December 29 2008
St. Lukes Hospital, Bethlehem, Pa.
Dr. Frank Tamarkin
Prostate weight 73.0 grams, Gleason 3+3=6, stage pT3a
Tumor locations: right anterior apex, right posterior apex to mid
left anterior mid to base, left posterior apex to mid
extensive perineural invasion in right anterior apex, right and left posterior apex to mid
seminal vesicles negative
Six PSA tests undetectable, latest April 30
Pad free beginning Mar. 18, 2010!

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