incontinence issuses

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buckeye42
New Member


Date Joined May 2009
Total Posts : 12
   Posted 7/17/2009 11:48 AM (GMT -6)   
hello all .I need to find if i am normal. cool I am 2 months post robotic surgery.I have always been dry at night,however during the day when i am standing or walking i drip. i fill about 1/2 full4 to 5 pads.I  see maybe slight improvement.you guys does this sound normal progession.thanks a lot   

london2000
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/17/2009 12:11 PM (GMT -6)   
Hi Buckeye,

I'm not sure what is "normal" but there are many in a similar situation to yourself, me included. I'm also 2 months post RP and my incontinence is similar to yours although I am seeing some improvement which is encouraging. I am able to retain urine when standing (with some leaks) but it drips out faster when I start walking or bending.

Progress comes slowly and comparing one day to the next is not necessarily very helpful because there are ups and downs on the journey. It is better to compare week by week when the changes are more noticeable.

My progress was also set back by a mild urinary tract infection which was almost symptomless (apart from incontinence!). Once that had cleared up my rate of progress accelerated. It might be worth getting yourself checked for an asymptomatic UTI.

Some men seem to have no problems from the outset but I suspect they are in the minority. Many have had similar experiences to you and most regain full (or virtually full) continence but it can take many months.

Good luck, and take heart in not being alone and in the small improvements you are seeing.

Cheers, Roger
Diagnosed with PCa in April 09, aged 59. PSA 9.5 ng/mL, Gleason 3+3, 3/8 cores positive on biopsy.

Had laparoscopic radical prostatectomy in 21 May 09. Histopathology raised Gleason score to 3+4 but cancer confined to capsule with surgical margins being negative. Stage T2c. Nerves spared.

Catheter removed on 4 June 09. Currently coping with incontinence issues, but making progress!


Dirtmover
Regular Member


Date Joined Apr 2008
Total Posts : 158
   Posted 7/17/2009 12:46 PM (GMT -6)   
your right in there brother if you are comparing to most , i was dry at 10 weeks , and it literally happened overnight , however i made it a very strong point to not wear pads around the house .as i believe you can become psycologically dependant on them  (my opinion) shouldnt be long brother ..............................dirt turn
Diagnosed November 2007   (43 years old )
PSA 3.9 / Gleason 6 / TC1 6 cores 1 shows 25%
Sugery scheduled 5/29/08 - City of Hope - Dr. Mark Kawachi
 "First show of the day"
 and now for the new ive been waiting for
 FINAL PATH REPORT:gleason upgraded to 3+4 T2c bilateral disease,tumor involvment 5%
extra prostatic extention:absent
seminal vesical invasion :absent
pathological staging:pTNM pT2 ORGAN CONFINED
margins free of carcinoma
usable erections ;6-6-08 with little blue pill
continence; 1 pad a day, dry at night
continence a non issue at 10weeks
 1 year p.s.a. undetectable


donte
New Member


Date Joined May 2009
Total Posts : 6
   Posted 7/17/2009 1:33 PM (GMT -6)   
Buckeye, I also am 2 months post op.  I had my first psa last week and doctor gave me a "C" on incontinence.  I'm using 5 pads during the day, but change frequently, a collection of 2 pads.  Nighttime dry, and when sitting I know when to go. But when active, as in yard work and soccer practice I'm not on guard and leak moderately.  This week,  I'm noticing an improvement,  strengthening my wall with more kegans and swimming and running in the pool.  Let's keep marching on...good luck.
 

Age 57

PSA  4.6   2/2005   (not addressed by family doctor)

PSA  7.6   2/10/2009

PSA  7.9   2/17/2009

Biopsy: 3 of 12 cores positive 25% left side

Gleason 3+4=7

Stage T1c

 

Robotic Surgery  5/18/2009

Roswell Park Cancer Inst., Buffalo, NY

Dr. James Mohler

Upgrade Gleason 4+3=7

Tertiary grade 5

15% gland involved

Stage T3a

Focal extrprostatic extentension

High grade PIN

Perineural invasion identified

MARGINS of excision are NEGATIVE for tumor

Vascular/lymphatic invasion: NO

Seminal Vesicle invasion: NO

Lymph Nodes: None sampled 

Pathological Staging (pTNM):  T 3a  NX  MX

cather out  5/28/2009

 

PSA  .04   7/9/2009  (week 6)  


buckeye42
New Member


Date Joined May 2009
Total Posts : 12
   Posted 7/17/2009 2:14 PM (GMT -6)   
thanks guys i love being normal,all kidding aside thanks for your input

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 7/17/2009 3:04 PM (GMT -6)   
buckeye, I know this part of your recovery is frustrating, but for 2 months out, you are definitely in the normal range for sure. it varies so much from person to person ,so there reason isn't an absolute normal to aim for. hope you continue to heal and to dry out.

david in sc
Age 57, 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 capsule, one post. margin, clear lymph nodes 
First PSA Post Surgery   2/9 .05, 5/9 .10, 6/9 .11, 8/11 ?
Lastest 7/13 met with Rad. Oncl, they want to start radiation, 70 gray, I am still considering all options and opinions
 
 


chippers
New Member


Date Joined Jun 2009
Total Posts : 5
   Posted 7/17/2009 8:00 PM (GMT -6)   
Buckeye first of all wise move using this board I know it has been a great help for myself. It sounds as if your results closely parallel what I am experiencing. I had my RP June 11th and I had the catheter removed June 22nd. Technically I have been working the continence issue for approximately four weeks and I am currently using three to four pads daily and two pads at night. As someone on this board recommended and I am now doing when I do urinate I am attempting to stop and start and I am experiencing some success with that. Another suggestion I took from this board was to cut back on carbonated drinks as well drinks with caffeine such as coffee etc. and that also seems to be helping. My leakage comes primarily from getting up after sitting for awhile or doing any kind of movement out of the ordinary such as turning, bending, coughing, or sleeping on my side etc.. Overall I find it to be true what I have read on this board numerous times and that is you take the old proverbial three steps forward and one or two steps back. I spoke with one individual who had robotic surgery and he told me he experienced leakage for four months but when it stopped it was as if someone hit a light switch, it stopped all of a sudden. It sounds like both you and I are doing well, hang in there!

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 7/17/2009 10:11 PM (GMT -6)   
I have found another trick. When you are about to do something that customarily causes leakage, such as standing, to anticipate it and kegal hard prior to and during the standing motion. Even as you walk, try to kegal as you go. This helps train the sphincter to do the same during these activities.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 7/18/2009 4:52 PM (GMT -6)   
Hello All:
 
Per my discharge instructions from Hopkins:
 
....Urinary control returns in 3 phases:
  • Phase I - you are dry when lying down at night;
  • Phase II - your are dry when walking around;
  • Phase III - you are dry when you rise form a seated position.

This is the last component of continence that returns.

Also, the 'stop and continue' excercise is actually standard recommendation as the most effective way to do Kegels. It was in my discharge instructions as well.

Hope the above phases  provides some structure in how we look at progress with incontinence. I am 7 weeks. I think I am still about 70% phase 2. sometimes feels like 100%..

 


>Age 41 (At Dx-July 05) -Psa during annual physical went from previous 2.8 to 3
>Biopsy by 'primary' Urol Aug 05 - Gleason 6 low grade. 2nd opinion at  Hopkins confirmed Dx
>Chose Active Surv (AS)- modified diet etc.
>Around Oct 07 Psa moved up to 5.5. I decide to treat at Hopkins. Not sure what kind yet. My doctor decided on re-biopsy first.
>2nd Biopsy Dec 07 at Hopkins was NEGATIVE for Pca! Nothing found in 14 cores!
>'Primary' Urologist baffled. Planned a saturated biopsy (22 cores) to settle issue once and for all. I wasn't going to do 22 cores wide awake!
>July 07 - Did MRI just for comfort. Nothing significant found. No spread. I'd live! Still in AS mode.
>July 08 - Saturated Biopsy performed. Cancer confirmed again (of course, you took 22 cores)! Same Gleason score, same grade, similar numbers but Urol says treat very soon! I am thinking not so fast - numbers are same and you told me it means not aggressive! In any case I agreed with Urol that I will go the way of the Seeds. I research seeds more and I don't like it.
>July 08 - Dec 08 I re-lapse back into AS mode but seriously researching/considering treatment options beside surgery - went on to Mass Gen and Georgetown to explore proton therapy and Cyberknife respectively. Anything but Surgery! Both experts who are about my age were unanimous in strongly declaring they will chose surgery 'if they were me'. In addition, I learn that if either if these radiation methods (and seeds too!)  failed, no backup plan (or will be complicated)! I got the message!
>Jan 09. Went back to see my doc at Hopkins. I decide to put my fate in the hands  of the 'Da Vinci Robot' then!
> May 09. Had surgery. some Pain and discomfort but normal. Pathology all clear. Gleason 6 as before. Feeling very lucky. I gambled (based on my numbers and got 4 more years!) on the slow nature of the cancer and took my time. Very happy I finally did it. Hoping for a great recovery of all 'key' functions. Great wife and family helping out.


london2000
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/19/2009 2:32 AM (GMT -6)   
Hi IKE-D,

I've seen those three phases to full continence posted before but, at least for me, Phase III doesn't apply as written. I'm still only a little way through Phase II but from very early on I've been able to rise from a seated position and remain dry.

The killer for me, and what I suspect will be my personal Phase III, is to remain dry as I sit down from a standing position. Sitting down (or bending down) almost always produces a squirt!

Roger
Diagnosed with PCa in April 09, aged 59. PSA 9.5 ng/mL, Gleason 3+3, 3/8 cores positive on biopsy.

Had laparoscopic radical prostatectomy in 21 May 09. Histopathology raised Gleason score to 3+4 but cancer confined to capsule with surgical margins being negative. Stage T2c. Nerves spared.

Catheter removed on 4 June 09. Currently coping with incontinence issues, but making progress!


Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 7/20/2009 9:10 AM (GMT -6)   
buckeye42 said...
hello all .I need to find if i am normal. cool I am 2 months post robotic surgery.I have always been dry at night,however during the day when i am standing or walking i drip. i fill about 1/2 full4 to 5 pads.I  see maybe slight improvement.you guys does this sound normal progession.thanks a lot   
I was going through 10 to 12 pads the first several weeks post-op and didn't see much change in that frequency until about the third month, if I'm remembering correctly.  It was a horrible period of time, because I kept wondering if things would get better.  I'm now 9 months post-op and using 1 pad per day (and it rarely gets "full").  For the several weeks post-op I'd have some overnight leakage, not much - but it's been probably 6 months or more since I wore a pad at night.  What you're describing sounds "normal" to me, given my own situation and what I've read here from others.

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 (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

 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 8/6/2009 3:28 PM (GMT -6)   
I'm 6 days post catheter removal and am going through pads faster than a Georgia cop writing speeding tickets. 8 during the day, 2 at night and 2-3 Depend changes when the pad over fills. Every pad I change is full. (I get my money's worth.) I have been frustrated by lack of progress.
When I get up from the bed I run to the shower and let 'er go. Based on your advice I will try to stop the stream.
I gush whenever I get up from a seated position or reach down to pick up something. I'll try Kegeling now and get up from this table. Maybe I'll make it to the bathroom.
On your mark... get set...Go!
Edit Made it!
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and 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
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX

Post Edited (Worried Guy) : 8/7/2009 9:18:35 AM (GMT-6)


Geebra
Regular Member


Date Joined May 2009
Total Posts : 476
   Posted 8/7/2009 9:17 AM (GMT -6)   
I was very slow in the continence department. It took me three months to go from 8 pads a day to 1 or 2. Then 9 months to get rid of the last pad.

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


Timmy77
Regular Member


Date Joined Jul 2009
Total Posts : 40
   Posted 8/10/2009 12:14 AM (GMT -6)   
I am not sure if what everybody calls a pad I am 2 months out and go through 2 diapers a day, I hope to get to pads. I have gotten better in the last 2 weeks I was using 6 I may need to change a little more often since I am wet in the back (it wicks back) but I have a smelly back side since i sit in it. I still go each time I stand up quite a bit but not as much as at other times. It is getting better
Timmy77
48 yrs old
Robotic RP
6-15 2009
Surviver


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3739
   Posted 8/10/2009 6:19 AM (GMT -6)   
Timmy77, I'm using the Depend Guard for Men pads or Tena Pads inside my diapers. That's what I call pad. They are quick to change and the diaper stays clean. I am such a cheap b*stard I refuse to change anything unless it is soaked to capacity. The pads work great and fill up in about 2 hours if I am awake and active. The timing matches nicely to my pit stop schedule of old.
I wear my regular briefs on top of the whole paper-plastic-grilled-cheese sandwich to keep everything supported. It looks almost normal until you yank the pad out of the diaper in a bathroom stall - sounds like duct tape.
Jeff
Age 56. Perfectly healthy with no problems until getting the results of my first routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: 23.2.
June 10 Biopsy 7 out of 12 cores positive, Gleason 6=3+3.
Bone scan and C/T scan negative.
----------------------------------------------
7/21/2009 Radical prostatectomy by Da Vinci @ University of Rochester
Left nerve gone, right spared.
----------------------------
7/31/2009: Catheter removed and 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
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX

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