When incontinence improves...

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 2/5/2010 9:33 AM (GMT -6)   
Just to rephrase the question:
 
Does it happen overnight kind of?
 
Is there a specific point where you notice significant improvement?
 
Is there anything you've done specifically to hasten/cause the improvement?
 
Mel
63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.  
History of BPH/prostatitis. PCA-3 test: 75.9 (bad news, guaranteeing I have to do....): Biopsy on 11/30/09. Result of biopsy:

5 out of 12 cores positive. Gleason 4+3. More specifically: 2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C

REVISED BIOPSY REPORT: The previous was read by Umich. Slides were then sent to Dr. Menon at Ford Hospital. Here is their report (much better) -- changes in bold print below:

5 out of 12 cores positive. Gleason 3+4. More specifically: 2 cores were 3+3 (one 5% and the other 20%) on one side. On the other side, 3 cores were 3+4 (5%, 5%, 20%)

 Surgery with Dr. Menon at Ford Hospital,  1/26/10. He says all looked good. Spared nerves. Awaiting pathology report, set for 2/2/10.

Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland.

Lymph Nodes: Clear

Perineural Invasion: yes. Seminal Vessical Involvement: No

Extraprostatic Extension: yes

Positive Margin: Yes-- focal-- 1 spot .5mm

Final Weight is 52.7 gms

Incontinence: just joined that club-- definite leaks-- my guess is 1 pad during the day -- at night??? First night tonight!

 

 

 


NY-Sooner
Regular Member


Date Joined Sep 2009
Total Posts : 464
   Posted 2/5/2010 9:40 AM (GMT -6)   
It happened for me overnight.  I was using 5-7 pads a day for three months, and then just like out of the blue, overnight I woke one day I was using 3 pads, and then in a few days I was down to 1 pad and in anothe few days, I was dry.  It happened just that fast, and I didn't do one kegel after my surgery. Today 2 1/2 years after my surgery, I stll use a pad to catch the occasional stress leak, but nothing more than that.  The one problem I do have is as soon as I get sexually aroused, I will loose all continence control and I will start leaking uncontrolably, which is very frustrating. 

 
Age 56, Biopsy 6/2007 - PSA 4.5, 2 of 12 with  <5% cancer Gleason 6
Surgery 9/2007 Strong Memorial,  Rochester  NY with Dr. Jean Joseph (1300 plus surgeries)
 Path - Negative margins, cancer in 20% examined tissue, Gleason 6
 Post Op - No ED issues, full erections without drugs,  used 5-7 pads a day for 3 months. Now dry except for stress leaks now and then.
 All post op psa's <.04


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 2/5/2010 9:42 AM (GMT -6)   
Mel,

I will give you the answer you don't want to hear, but I hope it does some good.

No - to all these questions.

These incontinence issues are just too different from person to person, case to case, even from day to day. I think you are being unreasonably harsh on yourself this soon from a major and complex surgery that re-routed your inner workings. You are already doing much better than many others have on your current time line.

Not everything in this PC recovery can be put to rules of logic and perfect sequence. There is a thing called natural healing, and how that works with Mel, depends on so many things, most, if not all, that you have no control over.

Don't dehydrate yourself, not going to help you become continent, only going to hurt your body in the long run. Drink plenty of water in particular, whenever you need to. Staying away from booze, caffine, sodas, juices, etc. can help, as they all aggitate the bladder walls, that's a proven fact.

You have to learn patience, as you will make all the recovery parts too hard on yourself, and others around you. Not fussing at you, just wanting you to look in the mirror and ask yourself, are you being fair to yourself?

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, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


Redman55
Regular Member


Date Joined Jan 2010
Total Posts : 87
   Posted 2/5/2010 9:53 AM (GMT -6)   
I am 3 months out and am down to about 2-3 pads a day. First major improvement came through the night where I basically don't wear one. each day is different, but the leakage definitely declines. They say the kegal exercises are important and I still do them. I expect continued improvement, but the stress issues per standing, coughing, sneezing etc. will probably be there for some time with me, if not forever. As posted earlier, patience is the key as you lost one of your bladder sphincters with surgery.
Age 54
PSA 8/2009 5.6 Gleason 8
DaVinci surgery 11/2009
Pathology - totally contained in margins -one bundle spared
PSA now undetectable at < .05
Continance: Night and morning fine and improving
Doing 3 P's and now using trimix


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 2/5/2010 9:57 AM (GMT -6)   

David:

You are 100% correct on this. I am just having a bad day today, all around. I was doing quite well and I was quite pleased with the continence issue the first few days as I knew I was doing well on a relative basis.

Today I am just frustrated with this whole thing. The pathology report was devastating to me and when I started bleeding with this morning's first urination, this whole darn situation just fluttered to the surface today. So, the post you read is just a symptom of this whole frustration which just welled up in a boatload of tears this morning.

I have to believe most of you (all?) have been there before.

 

Mel

 


63 years old
PSA-- 3/08--2.90;  8/09--4.01; 11/09--4.19 (Free PSA 24%), this after 45 days on cipro! DREs have always been normal.  
History of BPH/prostatitis. PCA-3 test: 75.9 (bad news, guaranteeing I have to do....): Biopsy on 11/30/09. Result of biopsy:

5 out of 12 cores positive. Gleason 4+3. More specifically: 2 cores were 3+3 (one 5% and the other 30%) on one side. On the other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C

REVISED BIOPSY REPORT: The previous was read by Umich. Slides were then sent to Dr. Menon at Ford Hospital. Here is their report (much better) -- changes in bold print below:

5 out of 12 cores positive. Gleason 3+4. More specifically: 2 cores were 3+3 (one 5% and the other 20%) on one side. On the other side, 3 cores were 3+4 (5%, 5%, 20%)

 Surgery with Dr. Menon at Ford Hospital,  1/26/10. He says all looked good. Spared nerves. Awaiting pathology report, set for 2/2/10.

Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland.

Lymph Nodes: Clear

Perineural Invasion: yes. Seminal Vessical Involvement: No

Extraprostatic Extension: yes

Positive Margin: Yes-- focal-- 1 spot .5mm

Final Weight is 52.7 gms

Incontinence: just joined that club-- definite leaks-- my guess is 1 pad during the day -- at night??? First night tonight!

 

 

 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 2/5/2010 10:09 AM (GMT -6)   
Another thing to be aware of is you will have residual swelling of the bladder and urether for some time after catheter removal. Things really don't get to a 'steady state' for maybe a month after removal, so you don't know that what you have now is what you will have when the swelling and irritation is gone later. Also, the brain needs time to adjust and learn the new system it has to deal with, urinary wise. It may be more or less a month from now, so you're just gonna have to try to relax, heal, and let nature take its course, nothing much you can do to alter that. Do those things that will help speed healing, keep your body as healthy as possible and keep on waiting to see what you end up with.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Ricky2
Regular Member


Date Joined Dec 2009
Total Posts : 97
   Posted 2/5/2010 10:23 AM (GMT -6)   
To add to what James just posted. Your bladder not only swells from being pulled down, but it also loses it elasticity. The bladder wall is usually very thin and elastic. It takes awhile to regain that elasticity. At first I felt the urge to pee all the time and I would have to get up about 4 times at night. Now I am down to once a night and my bladder can hold a lot more. Don't get discouraged! Stay positive! You will heal and the chance of reoccurrence is very small even with you path report.

God Bless!

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.


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2217
   Posted 2/5/2010 11:25 AM (GMT -6)   
David is right: we are all different when it comes to continence (and different when it come to PCa too)

We will all end up somewhere different and take different amounts of time to get there.

A few points though.
The robot doesn't leave much evidence on the surface, but inside a lot has been pushed pulled cut sewn shoved and bashed and will take a while to recover and especially for the swelling to go down. My surgeon suggested 10 weeks to three months for that stage of things to be resolved. The join between bladder and urethra will take a will to heal, that area will be especially swollen and not like normal.

I, and I am sure lots of us, have had strange sensations in our rectums for instance when in theory nothing should have been done to them, they merely get moved about, bruised disrupted etc.

There are also stitches of some sort inside you that will be in the way of things till they disolve.

And anyone who has had a catheter in them as a result of injury or surgery, even stuiff that has nothing to do with PCA or a prostatectomy and even if their plumbing has not been chopped about will take a while to recover simply from having an artificial bit of standard size pipe inside their non-standard size body for several days. The balloon end of the foley has spent a few days annoying loads of nerve cells on the inside of your baldder and they will take a while to calm down.

Your body will also take a while to process the drugs and chemical that were put into you for the operation. They have gort into your whole body. Your liver and kidneys and thus your urinary system has to deal with that.

I was about 6 to 7 weeks on before I stopped using pads and started thinking "continent" instead of "incontinent", but there are still dribbles and yesterday which was six months and week after my op I had a particualrly large leak, but it was late in the evening and fortunately I was in the bathroom at the time. My Auto pilot took over: wait, pause, deep breath, clean myself, clean the floor, check the system really was empty, wet shorts in the laundry basket, clean shorts from the shelf and back to bed and to sleep. No big deal. What was to blame, half a glass of beer perhaps with my evening meal.

Today has been fine, but I expect I'll go to bed a bit earlier.

It's hard trying to be a patient patient.

Don't worry about getting annoyed and frustrated. And Good luck.


Alfred

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7078
   Posted 2/5/2010 11:31 AM (GMT -6)   
Mel,
I had gotten better in the pads dept., but then started getting more exercise in general. Went back to the original 7/day, but it has bounced back to 2-3/day. It is a rollercoaster for me - I buy pads in industrial quantity when on sale not knowing if today is a one or a seven. I am dry at night (and have been since day one) unless I sneeze or cough, which opens the gates, so I wear a pad at night.
So, 15 weeks out from DaVinci, I would say that walking and daily rounds of Kegels are working. Which one ? - no way to know, except that I was housebound for weather a week or so, and things improved still with Kegels only.
The Dr. told me to start Kegels at 2 sets of 10 flexes (1 flex =10 seconds tensed, ten seconds relaxed) the day after they pulled the catheter, and move up a little at a time. I had a lot of pain at the 3 set mark, and it was because I had a lot of debris at the urethra suture. That cleared over the +5 - +8 week period, and I don't have problems now until the 5 set mark (because of some hip nerve damage in a previous surgery, so that limit for me may not apply to others).
So today, my routine is that one pad serves first thing in the morning through mid afternoon, then I go through a couple more later in the day. Probably just because the muscles get tired. Looking back, that is a dramatic improvement.
Also to be said that I don't abide a sopping pad, so I only "fill" one in the worst circumstances. Once it is uncomfortable, next available restroom is obligatory. I don't weigh or measure them, although I would say that they become uncomfortable once 1/3 - 1/2 saturated.

All the details and specs are up to others - but the message is "hang in there". It is too early to be worrying. That only makes it worse (been there, done that). As everyone else has experinced, I suspect, rolling up in a self-pity ball happens, and will happen again. My doc said 12 weeks was probably a turning point, and it probably was. But as always, if there is a 2% club (as in only 2% continue to have problems) there is a membership waiting for me.

MrGimpy
Veteran Member


Date Joined Jul 2009
Total Posts : 504
   Posted 2/5/2010 11:41 AM (GMT -6)   
Hi Mel,

For me the 1st few weeks showed improvement pretty fast, I had a real problem with bending and getting back up, lifting anything and laughing. Then when I was down to 2 pads a day my Dr told me to go home with no pads and that my mind will take care of the final stages on incontinence. He was correct and I have never used a pad after that appointment ( 3 month post-op visit)

Walking helped me greatly, as did staying away from coffee, all alcohol and carbonated beverages. If I recall once I was continent again, I went back to coffee and wine with no problems at all
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

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 18, 2018 6:33 PM (GMT -6)
There are a total of 3,004,439 posts in 329,145 threads.
View Active Threads


Who's Online
This forum has 161738 registered members. Please welcome our newest member, Rosheen.
202 Guest(s), 5 Registered Member(s) are currently online.  Details
Saipan Paradise, Blue Roads, InTheShop, Woodduck12, iPoop