Recovering Continence Post-RP

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

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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.

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.

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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.

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.

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

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

Thanksgiving was 4 weeks out, 8 pads per day for me. First real constant improvement was about 12 weeks out.

Thanks, 142. I like the AccPackSack idea.

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

NOW they tell me I need patience for this!

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

Try harder. Oh, I forgot, you have that problem too .

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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

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

"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?

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.

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.

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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!

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."

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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.