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Floyd
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 2/18/2010 8:02 PM (GMT -6)   
Hello to all on the forum. I have enjoyed the wisdom and the information avaliable here and I guess that I just desire some re -assurance about post op incontinence. For brief background I was followed closely by my urologist for elevated PSA`s (gradually rising to 5.8) with 3 suspicicious biopsy`s followed by one in Dec. 09 that revealled Gleason 6 adenocarcinoma in several locations. My father died in 2000 from an unusually aggressive form of prostate Ca. I am 54 years old. I decided on surgery and was initially scheduled to undergo Robotic RP last month but due to the unexpected death of my son in late Dec 09 we put the surgery off until last week (surgery was on 2-8-10.) The surgery went OK except the Doc said I had more bleeding than he anticipated and that he had to cauterize multiple areas and he said that that made him unsure if he was able to spare the nerves from injury. Post op path looks encouraging with clear margins and no signs of tumor in the seminal vesicles. I tolerated the cath OK and had it removed 3 days ago. I expected some incontinence but it has been total since then with any activity other than sitting still. I am unable to accumulate any urine to speak of in the bladder; it just constantly empties. I have been using about 6 to 8 pads per day. I have been doing the exercises religously and am watching what I drink. This is definitely the hardest part to deal with. I`m giving thought to buying some hose clamps (not really..) I am scheduled to return to work in 3 days and work closely with clients and am concerned about how to keep from smelling like a urinal. I change pads often and try hard to maintain hygeine. If anything it seems like it is getting worse since I have been leaking even while sitting at times today. I know it is really early but any feedback would be appreciated. Are there any tips to control odor also? Thanks much in advance.

keysailfisher
Regular Member


Date Joined Dec 2009
Total Posts : 346
   Posted 2/18/2010 8:23 PM (GMT -6)   
Floyd i'm with ya my surgery was on 2/5 cath out 2/16 did the exercises but didn't seem to help. I think i strained to hard the first day the cath came out pinkish looking urine. Like you said seems to just squirt on it's own. They keep saying it will get better, hope so.
 
Good luck
 
Neal
age 45
psa 3.09
Biopsy results 12/9
Left side base 3+3=6 21% 2/2 cores positive
Left side mid  3+3=6 100% 2/2 cores positive
Left side apex 3+4=7 88% 2/2 cores positive
Right side - 0/6
CT & Bone scan negative
Davinci Feb. 5th 2010/ cath removal 2/16
 
Gleason-3+4=7
Extent of tumor-Bilateral
Extraprostatic Extension-Absent
Seminal Vesicles-Negative for tumor
Surgical Margins-Rt apical margin focally positive
lymphovascular invasion-Suspicious in areas of capsular involvement
Regional lymph nodes-One node negative
Stage-T2c NO MX


Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1210
   Posted 2/18/2010 8:23 PM (GMT -6)   
Hi Floyd,
 
You are VERY early in the recovery process and most of us will leak in varying degrees for at least 2-3 month. Some reported complete continence soon after surgery, but those are the exceptions, not the norm. You will have to be patient a little longer, do as much walking as you can comfortably handle and keep doing your kegels. I'm sure that in a few more weeks you will notice a big improvement.
Wishing you a quick and complete recovery.
 
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 in Jan., 09=0.05; July 09=<0.04; JAN 10=<0.04


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 2/18/2010 8:27 PM (GMT -6)   
Hi Floyd,
Welcome to HealingWell.
Your questions sound like mine 6 months ago. 7-8 full pads per day, nothing retained in the bladder except after sleeping and sitting.
What foods should I forgo so I don't smell like a urinal? Asparagus.
The guys here were great with many suggestions.

It is unfortunate that you have to return to work so quickly. I can name a couple of guys who did the same and used a Cunningham Clamp to control leakage. That is discouraged by most Uros but "you gotta do what you gotta do". I tried one a few times myself.

You are very early in the process. about 2/3 of men will be continent at 3 months. Of the remaining third, 2/3 will be continent at one year.
Patience, and exercise are key.
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 6=3+3. 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, See Uro 1/22/10 Trimix unsuccessful.
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (Try cutting down on fluids. Bad idea. I know.)
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day
1/11/10 6 months: Still 3 pads but leak is now 320 ml (5 day avg.)
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04, 1/14 6 months - 0.05.


RJohn
New Member


Date Joined Jul 2009
Total Posts : 7
   Posted 2/18/2010 8:34 PM (GMT -6)   
Floyd,

I leaked like crazy for 2 1/2 months and then slowly began to see improvement. At 4 months I was pad free. It will get better, just takes more time than we like. Sorry to hear about your son.

Robert
54
routine yearly physical PSA 7.9
biopsy positive 04/2009
Da Vinci @ Vanderbilt 06/2009
Gleason 3+4
PSA 08/2009 0.1


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/18/2010 8:51 PM (GMT -6)   
Floyd,

The incontinence battle is such a personal one, case by case, person by person. We have all been there to one degree or the other. You are so soon from major surgery, so patience will be needed. Hopefully, you will start to see improvements in the days, and weeks ahead.

You are going back to work real soon, hope you are up to it. Guess a lot depends on what you do for a living. Most urologists are against the clamp devices mentioned above, especially this soon, so you might want to clear that with your doctor if you were considering that.

My best to you, please keep us posted.

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
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
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 in at the same time, 2/8-Cath #11 out - 21 days


142
Forum Moderator


Date Joined Jan 2010
Total Posts : 6980
   Posted 2/18/2010 9:01 PM (GMT -6)   
Floyd,
I had the same immediate flooding experience (7+ pads a day/ 1 at night for security), age 56, DaVinci 10/2009), and am improving slowly, but improving (these days 2 a day, still the night security pad). The following is my opinion from that experience, and I am not a doctor, so take my comments as just mine.
1) watch not how much you drink, but what you drink. Too little fluid will cause as much trouble (urinary infections, urine so dense it irritates on its own). Water is king. Some will disagree, but I see that anything carbonated or heavily acidic opens the floodgates. So no beer, no coke, no sparkling water, no orange juice, even a small glass of champagne at new years blew right through. For me, any of those is bad. I've cut myself back to one cup of coffee a day, and that may be too much, but I'm not willing to go to decaf. Vitamin C comes from other, less agressive juices.
2) avoid heavily acidic foods - dill pickles and mustard on a sandwich cause me a bad afternoon.
3) the real "male guard" pads have some odor control properties (Depends, Walgreens Certainty). The only comment I have heard was someone who commented on an antiseptic smell (yes, that was me they noticed).
4) Don't wait for "full" pads - that almost guarantees a big spill. Change when you can rather than when you must. I will get argument on the board that this encourages wasting money, but I've wasted more on less important things in my previous life.
5) Get single packet wet wipes or equivalent, and use them frequently. Even a purell wipe is ok if you don't have any skin irritations, and used judiciously.
6) Avoid sudden moves or stretches.
7) Do the Kegels, at least 3 sets of 10 over the day (too many in one session stresses the muscles, so don't go for quantity)
8) Walk, walk, and walk some more. It is the only exercise they allowed me.

And don't stress. Worry and stress make it worse. I can say that now, and you can't do much about it, but worry and stress make it worse.

Welcome.

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 2/18/2010 9:26 PM (GMT -6)   
Floyd,
I concur with everything 132 above said. I leaked for 4 months. It was 2 pads per day then one then a thinner one until it finally almost stopped. I'm at just over a year and will have an occasional drop but nothing that requires a pad. I know one thing to add to the list of don't and that is tomato sauce or juice. I had a bloody Mary with tabasco sauce after I was dry that caused me to leak.
Be patient.
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 in circumference.
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
8 months PSA test 10/9/09 result <0.1
11.5 months test 1/21/10 result 0.004


Floyd
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 2/18/2010 9:29 PM (GMT -6)   
Thank you to all; the suggestions and sharing of your experiences help immeasurably. Patience is not one of my virtues. I tend to be the type that is impatient to "fix" a problem when faced with it and am finding it a little hard to relax with this. It helps greatly to know that you are not alone with the effects of this surgery. I have had major surgery in the past but this one effects you more in the way that you view yourself as a man than any that I could conceive.

Ricky2
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 2/18/2010 10:14 PM (GMT -6)   
Floyd Welccome!

I retained nothing in my bladder when I was up and about for 4 weeks. I was discouraged and thought it was a longer term problem, but within a period of a few weeks I completely dried up. I now have a closet of unused pads. When I was leaking I don't think people noticed the smell (I avoided asparagus). I changed my pad frequently when I was out in public.
Good luck to you in your recovery,

Ricky
Age 70

PSA 5/2008- 3.6, PSA 7/2009- 6.1, retested 9/2009-5.1.
Biopsy 9/2009. 4 of 12 positive. Gleason 3+4=7
CT and bone scan negative.
Robotic De Vince Surgery 10/29/2009. 1 night in hospital. No pain. Cath out on 11/6
Pathology Report: Gleason score 3+4. Margins slightly involved <.1mm to .25mm. Perineural invasion present, stage pT2c. Tumor 18%. Seminal Vesicle - absent, Lymph Nodes 0 of 6.
Continence- first 4 weeks after cath out Dry at night, rest of time, bladder held nothing. 6-7 pads per day. as of 12/30 no pads most of time. almost dry except for a few drips. I keep doing Kegels.
ED. Started VED on 12/17. 15 min every other day. 20mm cilias twice a week. No sign of life yet.


Floyd
New Member


Date Joined Feb 2010
Total Posts : 18
   Posted 2/19/2010 1:24 AM (GMT -6)   
RJohn, thanks also for the words of condolence. Early in December I thought that finding out that you had cancer was monumental but it later assumed relatively little importance in comparison.

cocrgolfer
Regular Member


Date Joined Oct 2009
Total Posts : 171
   Posted 2/19/2010 6:41 AM (GMT -6)   
Hi Floyd,

Four months ago I was in the same state of disbelief you are now. They told me I would probably be incontinent so I was expecting some drops or something, but a total complete lack of control blew me away. I found the following helped: I kept one of those plastic hospital urinals at hand and every time I got up I would practice standing there kegeling then peeing. When I could do that, the next step was squeezing and making a short trip to the bathroom. In a while (the time varies from person to person) I could walk further and further with less and less effort at holding it in. Last week I could get off the airplane and walk across the airport to a bathroom. I still cannot jog or power walk distances without leaking but I'm beginning to understand I am on the wrong side of the recovery bell curve. Your odds of getting dry are around 90% so believe it!

My deepest sympathy on the loss of your son. My brother lost his son, my favorite nephew, two weeks ago and the pain is unimaginable.

Steve
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