Recovering Continence Post-RP

How soon after surgery did you see real progress in your continence?
15
1-6 weeks - 42.9%
9
6-12 weeks - 25.7%
6
3-6 months - 17.1%
2
6-12 months - 5.7%
1
12 months + - 2.9%
2
12 months + and no progress - 5.7%

 
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Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1163
   Posted 11/18/2010 2:48 PM (GMT -6)   
Ok, so call be a whiner. It's only been a little over two weeks since surgery and already I've about had it with this bladder control bit.

It seems like some days are better than others. I know every man's experience is different, but have most of you found that recovering continence was a pretty consistent progression, or were there lots of ups and downs?

Also, what's a realistic time-frame to expect real progress? My uro seems to think I'll be a lot better in 4-6 weeks, but I'm starting to think it's easy for him to talk.

What's the straight scoop on this?
Age 55
PSA: 8/09 2.69 -- 7/10 4.00 -- 8/10 4.11
--------------------------------------------------
Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------------
open radical prostatectomy at Cleveland Clinic 11/2/10
Post-surgical pathology:
Gleason score 7 (3+4); Three positive margins
Stage T2c(+)

Post Edited (Jazzman1) : 11/18/2010 12:52:29 PM (GMT-7)


CharlieTuneA
Regular Member


Date Joined Aug 2009
Total Posts : 37
   Posted 11/18/2010 2:57 PM (GMT -6)   
All of this discussion about bladder control reminds me of a stupid joke:

Doctor to patient: I'm sorry to tell you, but you're incotinent.

Patient: I'm in a continent? Really, which one?

Doctor: The European (you're a-peein') one.

-Charlie
Age at diagnosis 59, PSA 1.4
Biopsy 12/08 12 cores, 6 positive
Gleason 3+3=6
CAT scan negative.

DaVinci surgery 6/16/09
After 10 days, cystogram revealed fistula
Catheter Removed 7/17/09
Fistula still evident week of 8/24
PSA 0.03
Catheter Reinserted 8/28/09
2nd catheter removed 9/28/09
 
Started course of imipramine on 2/4/10 for incontinence
ED? - more like non-function than dysfunction.

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 11/18/2010 4:17 PM (GMT -6)   
Saw real progress at about 4 weeks after surgery, was off of pads at 8 weeks. The straight scoop is, you'll know when you get there, our progress is just that, ours, you may be dry in 2 weeks or it may take much longer.

Are you seeing any progress at all? If so IMO that's a great sign.
Diagnosed 12-09 age 55
07-06 PSA 2.5
01-08 PSA 5.5 (PCP did not tell me of increase or schedule follow-up!!!!)
09-09 PSA 6.5 Sent for consult with Urologist
11-09 Consult, scheduled for biopsy, found out about PSA from '08 (yes I was pissed)
12-09 Biopsy, initial Gleason 9 (4+5) later reduced to 8 with tertiary 5, ain't much but I'll take it.
01-10 Bone Scan, "appears negative"
03-01-10 RRP in Durango CO by Dr Sejal Quale and Dr Shandra Wilson, no naked eye evidence of spread, Vesicles and lymph nodes taken for microscopic exam.

03-16-10 Removal of cath' and pathology results of samples.
Multifocal carcinoma with areas of Gleason pattern 3, 4 and 5, Overall Gleason grade 4+4 with tertiary 5, Bilateral involving 21% of left lobe, 3% of right lobe, Invasion of left Seminal vesicle, Tumor focally present at left resection margin, 9 lymph nodes removed all negative, Tumor staging pT3b NO MX

04-23-10 PSA <0.04....... 06-07-10 PSA <0.04..... 08-03-10 <0.04
05-03-10 1 week without pads
06-28-10 ;-)

lnwm
Regular Member


Date Joined Oct 2010
Total Posts : 21
   Posted 11/18/2010 6:11 PM (GMT -6)   
I feel fortunate with my results to date. Da vinci on 10/6 and cathere out on 10/16. I wore pads for about 2 weeks. The first few days I used more pads and finally got to the point after a week that one pad a day worked. I did kegels for several months prior to surgery and none after per Dr instructions for a couple of weeks. I am dry now except for the occassional spurt if I am lifting something. I asked the surgeon about testing to see if everything was good prior to pulling the catheter out (who wants to put that back in!!!) and he said that he always does a leak test during surgery.

Give it some time and work on kegels when we are given the green light.
Age 58 Gleason 6 T1C 7/12 samples with 5%-40%. No prior family history of cancer.
Da Vinci Oct 6 2010. Negative margins. Gleason raised to 3+4. Both nerve bundles spared.
First post-op PSA on Nov 17.

MinnJimm
New Member


Date Joined Oct 2010
Total Posts : 8
   Posted 11/18/2010 6:17 PM (GMT -6)   
It's been ten weeks and I am down to spotting and ocassional leaks. Usually late in the day when muscles get a bit fatigued. But getting better.

Also I know one of my problem is that I am obese and that puts extra pressure on the bladder. So 3 weeks ago I joined Medifast system and am down 15 pounds....whooo hooo only another 65 to go.

It's the ED thing that has me worried. I tried 100 MG of Viagra...nada. Doc says don't give up yet it takes some time.

I do feel some life down there but not enough

Good luck to all
-----
Age 63
2006 PSA - 3.0
6/2010 PSA 5.1
DX: Biopsy 7/2010
core sample 70% cancer Gleason 3+4 7
Di Vinci Operation 9/8/2010
Final Pathology 40% Cancer 3+4 Gleason
Lymph clear and seminal vessels clear
11/12/201/ - First post PSA <0.1
Contentence - 1 pad a day
ED - Limp

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1163
   Posted 11/18/2010 7:12 PM (GMT -6)   
Well this is encouraging news, so far. Sounds like all of you regained quite a bit of control in 2-10 weeks.

I'm not too bad if I'm inactive, but I just went out to a couple store and then dinner. Felt like I dribbled the whole time. God, this is frustrating.

I'll hang in there, and if I do as well as you guys, I'll feel pretty good about it. Not so sure about going to my brother's for Thanksgiving next week though.
Age 55
PSA: 8/09 2.69 -- 7/10 4.00 -- 8/10 4.11
--------------------------------------------------
Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------------
open radical prostatectomy at Cleveland Clinic 11/2/10
Post-surgical pathology:
Gleason score 7 (3+4); Three positive margins
Stage T2c(+)

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/18/2010 7:53 PM (GMT -6)   
Jonathan,

I would say that if you took an average of the guys on here, I would guess 2 to 3 months would be close. Some never leak after the catheter is removed, and some go for many months.

You will see progression, and it appears that usually it seems to be in stair steps. You will see no progress, and then you will see dramatic progress. Also, sometimes you will go backwards for a day or two, and then get better overnight.

Some liquids seem to make it worse. I find that iced tea and artificial sweetner cause me to leak . Some find wine or other alcohol is bad.

I would advise you to just figure out how to live with it, with pads, or Depends, or whatever. Some have found that going around the house without protection helps them to try a little harder to hold it.

Just don't let this darn PCa keep you from doing what you want to do. Even if you have an accident at your brother's house. Take along extra pants and some pads. Don't be embarassed. It is just what it is.

I was a slow stopper. I actually wore a clamp so that I could do what I wanted to do. Giving up my walnut was a big enough deal. I will not let it rob me any more.

I think you will do great if you already are doing as well as you are after only a couple of weeks. Just don't forget to keep on kegaling. Have a great holiday season.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7084
   Posted 11/18/2010 7:58 PM (GMT -6)   
Jazz,
 
I was invited to Thanksgiving at friends last year - they wanted to be sure I was fed properly - I walked in with my "AccPak Sack"  - accident pack of pads in a camera bag. It is part of having something to be thankful for. Nothing is free.
 
Take a nice bottle of wine (or other preferred beverage) - maybe they won't notice the pads, or at least will pretend not to smilewinkgrin
 
Thanksgiving was 4 weeks out, 8 pads per day for me. First real constant improvement was about 12 weeks out.

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1163
   Posted 11/18/2010 7:59 PM (GMT -6)   
Thanks, Goodlife; you're always so reassuring. As for me, I'm a Kegeling fool...

You have a great holiday season too.
Age 55
PSA: 8/09 2.69 -- 7/10 4.00 -- 8/10 4.11
--------------------------------------------------
Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------------
open radical prostatectomy at Cleveland Clinic 11/2/10
Post-surgical pathology:
Gleason score 7 (3+4); Three positive margins
Stage T2c(+)

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1163
   Posted 11/18/2010 8:07 PM (GMT -6)   
Thanks, 142. I like the AccPackSack idea.

It ain't quite like the sacks we packed in the '70s, but times do change.

Magaboo
Veteran Member


Date Joined Oct 2006
Total Posts : 1211
   Posted 11/18/2010 8:27 PM (GMT -6)   
Hi jazzman. You probably heard this before, but lack of patience is not
helpful with this disease. Two weeks after surgery I still had my catheter in place.
Just try and take it easy for a few more weeks and then, hopefully, you will see
a marked improvement.
All the best to you.
 
Mag

Born 1936
PSA 7.9, Gleason Score 3+4=7, 2 of 8 positive
open RP Nov 06, T3a, Gleasons 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; at SRT Start=0.1, Salvage RT completed (33 days-66Gy) 19 Dec 08
PSA: in Jan 09 =.05, all tests to date (Jul 10) <.04

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1163
   Posted 11/18/2010 8:34 PM (GMT -6)   
NOW they tell me I need patience for this! rolleyes

I'm tryin', mag... I'm really tryin'...

Acee
New Member


Date Joined Oct 2010
Total Posts : 8
   Posted 11/18/2010 9:02 PM (GMT -6)   
Six weeks from catheter removal and no improvement. Kegel many times a day.

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 11/18/2010 9:06 PM (GMT -6)   
Try harder. Oh, I forgot, you have that problem too .
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

pa69
Regular Member


Date Joined Mar 2009
Total Posts : 260
   Posted 11/18/2010 10:21 PM (GMT -6)   
It took about 15 months after surgery to give up the pads. I had almost given up hope during the time I was using 10 to 12 super absorbent pads per day. My progress was always gradual, never a sudden improvement.

Incontinence is a frustrating experience but don't give up hope.

Good luck,
Bob
Age 71, 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
Seven PSA tests undetectable, latest Aug 2, 2010
Pad free beginning Mar. 18, 2010!

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 11/19/2010 6:07 AM (GMT -6)   
I never leaked loads of pee into my pads after the catheter came out, and was okay at night.
In the first weeks I tended to change my pads a couple of times a day because they smelled bad rather than because they felt full.

I noticed improvement pretty quickly and thus after 6 weeks I stopped wearing pads, but continued to keep them in my pockets. And even now I still wear one if going on a trip when I am uncertain about the location of restrooms etc.

A full bowel also seems to press on my bladder and make it leak, or harder for it to fill up. I would also leak about two minutes after a visit to the bathroom for a BM and had to adjust my routine to deal with this.

Sex, or attempted sex, made things leak, and not only during the sex, but for a while afterwards too. That is a thing of the past now.

I had SRT 9 months after surgery which set me back a bit and a few weeks after SRT was the only time that I had my one and only flood while ironing a shirt. (of course I was not wearing a pad of any sort.

I hated people (docs) telling me it would take time to see improvement and I just had to be patient, when I was the one sitting there in the doctor's office with a wet c*ck, so I know it will be hard to accept that it is a waiting game, and you do have to be patient. And frankly I don't think it will ever return to how it was before surgery for anyone. But it should indeed get better

Alf

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 709
   Posted 11/19/2010 6:08 AM (GMT -6)   
Starts to get better at night, then morning and finally progresses to afternoon and evening.
 Mr. Bill
 
 

Acee
New Member


Date Joined Oct 2010
Total Posts : 8
   Posted 11/19/2010 9:35 AM (GMT -6)   
"Six weeks from catheter removal and no improvement. Kegel many times a day."

Let me clarify that statement. From the beginning I was pretty dry when in bed or when sitting. When standing I have short spurts and dribbles until empty. In other words if I'm on my feet I never retain anything, not an all at once dump but constant spurts.

So, when I get up from anywhere chair, car etc I immediately head for the bathroom to pee. If the bathroom is close sometimes I can make it without the spurts and dribbles starting. In this way I go to the bathroom a lot but don't have to change pads so frequently. Also I'm not a big drinker of fluids.

When peeing and I try to cut it off sometimes that works and others the stream is just reduced. I don't notice any rhythm or reason as to when that occurs.

Also, I do Kegel's 30 times a day.

Anybody else like this?

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1163
   Posted 11/19/2010 9:52 AM (GMT -6)   
Questionsaboutit: Thanks for your candor about an enormously frustrating situation. I'm about 2 1/2 weeks out, and you're about 2 1/2 months out. You must really be fed up with this crap. I hope things turn around for you sometime soon.

Alf: Thanks for your perspective; it's very helpful. It's amazing how starkly peoples' experiences differ on this, but I take comfort in your assurance that it should get better.

I'm doing a little better at night and when inactive, so I'm hopeful about the next couple months. Went out to dinner last night and had my first post RP beer, which I paid for in more ways than one. Tasted really good, though.

Today, it's back to the kegels, avoidance of everything that tastes good, and measured activity. Maybe I'll be better by Christmas.
Age 55
PSA: 8/09 2.69 -- 7/10 4.00 -- 8/10 4.11
--------------------------------------------------
Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------------
open radical prostatectomy at Cleveland Clinic 11/2/10
Post-surgical pathology:
Gleason score 7 (3+4); Three positive margins
Stage T2c(+)

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 11/19/2010 9:54 AM (GMT -6)   
Acee said...


snip
Also, I do Kegel's 30 times a day.

snip


If you're doing sets of 10 30 times a day you may be overworking the muscle and tiring it out. I was told by my Uro' to do 3 or 4 sets of 10 every day, holding the muscle tight for up to 10 seconds each time.

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1163
   Posted 11/19/2010 9:58 AM (GMT -6)   
I wondered the same thing, Dave. I got the same instructions from my doc.

More isn't necessarily better, but what do I know? Hope things turn around for you though, Acee.
Age 55
PSA: 8/09 2.69 -- 7/10 4.00 -- 8/10 4.11
--------------------------------------------------
Biopsy 8/10
Three of 14 cores positive: 10%, 60% & 80%
Stage T1C; Gleason 6
---------------------------------------------------------------
open radical prostatectomy at Cleveland Clinic 11/2/10
Post-surgical pathology:
Gleason score 7 (3+4); Three positive margins
Stage T2c(+)

Alegar
Regular Member


Date Joined Oct 2010
Total Posts : 91
   Posted 11/19/2010 10:50 AM (GMT -6)   
Jazz:

I'm seven weeks post RRP. I began with two pads a day after 16 with cath. Last week I had 3.5 days dry until two days ago when I seemed to revert to week one. Yesterday and so far today I'm dry.
Diagnosis:
July 1, '10
PSA 3.88
Gleason 3+3=6
2 out of 12 samples positive

Solution:
DaVinci Oct 1 '10, UNC Chapel Hill
Cath/JP Drain out Oct.16, '10

Personal Statistics:
Age: 54
Weight: 184 lbs.
Height: 6 feet

AIRBORNE ALL THE WAY!

Pocketman
Regular Member


Date Joined Aug 2010
Total Posts : 121
   Posted 11/19/2010 11:25 AM (GMT -6)   
I found too many kegels were actually making my sphincter sore, so backed off. I reread the section in Dr. Walsh's book and he mentions that the sphincter can get tired and suggested exercising while standing during urination.

While some have long term issues, the statistics seem to indicate that most do not. We have lost two valves, therefore the pressure (no pun intended) is all the one remaining. I am, to the hour, three weeks post RP, and seeing almost daily improvement. I've learned that caffiene is not helpful. Neither is two beers before going to bed. Patience, I keep telling myself.
Age 61, Diagnosed July 2010
PSA 04/09 - 2.5; 05/10 - 3.7; 07/10 - 4.7
DRE and Ultrasound - Negative
Size at biopsy - 32 grams
T1C, 3+3=6, 1 core of 12 60% positive
da Vinci 10/29/10
Post op biopsy indicated bilateral Gleason 6 tumors
Post op plumbing is 95% functional.

Pocketman
Regular Member


Date Joined Aug 2010
Total Posts : 121
   Posted 11/19/2010 3:09 PM (GMT -6)   
questionsaboutit said...

I got to do this while a new female doctor observed.  She looked about 15.

...

I find humiliation to be a major part of PCa.

 
Amen to both comments.  During my biopsy, the 15 year old nurse told "there is not modesty in urology."

Age 61, Diagnosed July 2010
PSA 04/09 - 2.5; 05/10 - 3.7; 07/10 - 4.7
DRE and Ultrasound - Negative
Size at biopsy - 32 grams
T1C, 3+3=6, 1 core of 12 60% positive
da Vinci 10/29/10
Post op biopsy indicated bilateral Gleason 6 tumors
Post op plumbing is 95% functional.

stevmac1
Regular Member


Date Joined May 2010
Total Posts : 129
   Posted 11/19/2010 3:35 PM (GMT -6)   
8 weeks to the day. Happened just like that, not really gradual at all. Bizarre.
steve
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