2 weeks post catheter, should I be seeing more progress on the incontinence front

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steph_beer_me
New Member


Date Joined Apr 2009
Total Posts : 14
   Posted 6/23/2009 8:17 PM (GMT -6)   
Hi all,
 
It's been about 2 weeks since my catheter removal.  Since day 1, I've been continent while lying down or sitting.   Where I'm not seeing any progress is while standing/walking.  Here's the scenario:
 
When I wake up in the morning or have been sitting for a while, I have no problems making it to the bathroom (if I go immediately there) and emptying my bladder.  If I instead walk around for 5-10 minutes, I begin to leak and will continue to leak until my bladder empties.  On a regular work day (I have a desk job and don't move around much), I go through 2 pads/day.  On a weekend, I'm more active (various social events involving a lot of standing and walking) and may go through 3-4 pads/day.
 
I've been following my surgeons kegel regimen to a "T", with an emphasis on kegeling while in the standing or while walking.  I also kegeled for 2 weeks before surgery.  I don't believe that I'm over or underdoing it.
 
I know things will improve for me but my question is, what is going to change to improve my situation?  Is there something else that I could be doing proactively, to get there faster?  Or do I just need more patience? 
 
Thanks in advance!
 
Dave
Age 40
Diagnosed at age 40 (March 2009) as a result of routine physical
Family history - Father diagnosed and treated at 64, one of his brothers at 70, maternal uncle at 60
PSA 19.14 (first PSA), pre-op PSA 3.93 (second PSA)
1st DRE - abnormal - 1cm nodule -  2 subsequent DREs by 2 different surgeons showed some firmness on right side, no nodule
14 biopsy cores - 1/4 positive on left, < 5% malignant, 3/7 positive on right, 10% malignant, 3 cores of nodule showed no malignancy
Gleason 3 + 3 = 6
Cat Scan - negative, believed to be prostate confined
Bone Scan - negative, no distant metastasis
Davinci RP performed 6/1 by Dr. Jean Joseph at Strong Hospital in Rochester
great wife and 3 young children (ages 4, 6, 8)


TeddyG
Regular Member


Date Joined Apr 2009
Total Posts : 133
   Posted 6/23/2009 8:32 PM (GMT -6)   

Dave,

Everybody is different but it sounds like you are still w/in an acceptable norm. Each day you will see a slight improvement but when you see where you are, say in a week or 2 from where you are now, you will see progress. I am almost 12 weeks out and while not totally dry, am down to one mini-pad/day. Of course I want to be fixed NOW but alas, one day at a time.

Good luck and keep squeezing.

 

 


Background:
Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.
Stats:
2006 PSA - 1.5
2007 PSA - 2.3
2008 PSA - 5.3 (18 mos.)
2009 Jan. 20 - Biopsy 12 samples
        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)
Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.
Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.
Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;
Regardless of the science, my family says "miracle."
Now working w/ post-surgery issues....
 


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 6/23/2009 8:35 PM (GMT -6)   
 
For a guy just 2 weeks post catheter you're going very well indeed. Most guys take at least 2 month to become continent. Some a little sooner; some a little later. The main thing that I did to speed up the process was kegels and a lot of walking (3-5km/day).
Patience is also very necessary to overcome the side effects of the operation.
All the best to you,
 
Magaboo 

Born Sept 1936
PSA 7.9
-ve DRE
Gleason's Score 3+4=7, 2 of 8 positive
open RP 28 Nov 06 (nerve sparing), Post op staging T3a
Gleasons still 3+4=7
Seminal vesicles and lymph nodes clear
Catheter out 15 Dec 06, Dry since 11 Feb 07
All PSA tests in 2007 (4) <.04
PSA tests in 2008: Mar.=.04; Jun.=.05; Sept.=.08; 3 days before Rad Start=0.1
Salvage RT completed (33 sessions - 66 Grays) on the 19th Dec., 08.
PSA on the 26 Jan., 09, =0.05. PSA tests now every 6 month


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 6/23/2009 9:04 PM (GMT -6)   
It is very frustrating to be incontinent but your case seems pretty much on track. At three weeks out I always carried a pad in my pocket because I never knew which of my hourly trips to the bathroom was going to need a change. Now at ten weeks I am pretty dependably one pad a day.

What will change? Well my doc says at least three months to heal even if you feel well sooner. And your engaging in regular activity strengthens the pelvic floor. So, hang in there, progress will occur.
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
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7
At 6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 6/23/2009 9:20 PM (GMT -6)   
Time should change your situation, and we all respond at different time intervals with the inconinence. Considering the short time you have been off the cath, you are doing quite well. I remember going through my "drying out" time, and I become so OCD about it, it was all I could think about. I know you said you didnt think you were overdoing the kegal thing, but too much is not always a good things, because you tire out that area if you do it in excess. Good luck to you in your final stage of getting dry.

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
 
 


IKE-D
Regular Member


Date Joined Jun 2009
Total Posts : 77
   Posted 6/23/2009 10:05 PM (GMT -6)   
Dave,

We are on the same calendar here. I am at about 2 weeks post cath as well and I am totally dry when lying down and when sitting. However when I go for my evening walks, I just leak. Can't even feel the urine coming out except the resulting wetness. I was wondering the same thing this evening i.e. When?
In my discharge instructions, my Dr emphasized patience as far as incontinence. The document also specified 3 stages of return of urinary control namely:

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.

It appears you and I are both still in phase I after 2 weeks (although sometimes I wonder if phase I is ever a problem for anyone).

Take heart..it's only been 2 weeks. It will be well.

Regards
IKE-D
>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.


STW
Regular Member


Date Joined Jun 2009
Total Posts : 292
   Posted 6/23/2009 10:15 PM (GMT -6)   
I found the change from 2 to 3 weeks post catheter was remarkable. At two weeks I thought I'd never see any improvement. At three weeks I was done with pads. I still occasionally get surprised by a laugh or a sneeze but they aren't worth mentioning. I'm walking 1.5-2 miles a day. It seemed sudden and liberating. I know some were better than I and some were worse. The key is that this too shall pass. Do what you are told and you will be rewarded.
Diagnosed at 54
PSA 8.7
Biopsy 1/7/09
4 of 6 cores positive, one at 90%
Gleason 3+4=7
Neg bone scan 1/15/09
One shot Lupron Depot 1/27/09
Tax Season
RP 4/29/09
Neg lymph nodes, postive seminal vesicle, 1 positive margin
Gleason 3+4=7 with tertiary 5
Catheter out at 2 weeks no nighttime incontinence
Pad free week 5
PSA 6/6/09 <0.1


steph_beer_me
New Member


Date Joined Apr 2009
Total Posts : 14
   Posted 6/24/2009 5:47 PM (GMT -6)   
Thanks for the replies everyone. I'm pretty much back to normal activities, well, no IC with my wife yet unfortunately :-(. I think my biggest frustration is with social activities (picnics, baseball games, camping, fishing, etc). If I'm either doing a lot of standing or moving around or want drink 2 or 3 beers, I usually pay the price with too frequent bathroom trips for pad changes. Oh well, I'll just keep doing what I'm doing and wait this thing out.

Again, thanks for all the replies.
Age 40
Diagnosed at age 40 (March 2009) as a result of routine physical
Family history - Father diagnosed and treated at 64, one of his brothers at 70, maternal uncle at 60
PSA 19.14 (first PSA), pre-op PSA 3.93 (second PSA)
1st DRE - abnormal - 1cm nodule -  2 subsequent DREs by 2 different surgeons showed some firmness on right side, no nodule
14 biopsy cores - 1/4 positive on left, < 5% malignant, 3/7 positive on right, 10% malignant, 3 cores of nodule showed no malignancy
Gleason 3 + 3 = 6
Cat Scan - negative, believed to be prostate confined
Bone Scan - negative, no distant metastasis
Davinci RP performed 6/1 by Dr. Jean Joseph at Strong Hospital in Rochester
great wife and 3 young children (ages 4, 6, 8)

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