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OK - You Dry Guys ...

mikey51
Posts: 17
Joined: Apr 2010

I am now 9 days post catheter and 16 days post DLRP. Some notes and some questions.

First off, my faith keeps me from coveting you guys who had bladder control from post-catheter from day 1. Congrats to those of you who were that lucky. You have rock star status to me!

For the rest of us slugs, did you find (or are you finding) that you see daily, weekly, monthly improvement - or are most of you waking up one morning with control? I can go all night essentially dry if I get up 2 or 3 times to go pee. I think I am noticing that it is gradually (glacial speed) that I leak a little less now after 9 days. But it is so gradual that it is kinda hard to tell. I do my Kegel's religiously.

Also, for what it is worth, I have been following a healthy bladder diet (for the most part) for the past week. That may be having an impact as well. I do have my one cup of coffee (not recommended, but I used to have 5) in the morning and full glass of red wine before bed (also not recommended), and I found this supplement called prelief which I take before coffee and before the wine. I think it is helping too since it takes the acid out of the coffee and wine as I drink it (or at least that is what is claimed.) I will keep you posted on how well it works, but I have to say that I do think it is helping as I don't seem to get as many "spasms" as I was getting before trying it. And, it is cheap. I figure it can't hurt and anything I can do to keep the ole bladder happy and healing is a good thing at this point.

Thanks

Mikey – 58 yrs.
DRLP date: 4/7/2010
Catheter removal: 4/14/2010
Final Pathologic Diagnosis
Procedure: Radical prostatectomy
Prostate size: 41 gm, 4.5 x 4.4 x 3.4 cm
Lymph node sampling: No lymph nodes present
Histologic type: Adenocarcinoma
Histologic Grade: 3+4=7
Tumor quantitation: 10% involvement of submitted tissue volume
Extraprostatic extension: Not identified
Seminal vesicle invasion: Not identified
Surgical Margins: Uninvolved by invasive carcinoma
Treatment affect on carcinoma: Not identified
Lymph-vascular invasion: Not identified
Perineural invasion: Present
TNM stage: pT2c pNX pMX

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I found that the first improvement was at night early after surgery....the rest was kinda spotty and certainly not overnight improvement. I found that once I started doing pretty good during the day...right around 4-6pm it would be very difficult to control leaking...I think I remember the doc saying that is because you have been up all day...and just that fact you were getting tired and start losing control. They also said control at night was because of a thing called "gravity" it just stays in better in a prone position. I saw my big improvement with no leaking at about 5 thru 7 or 8 weeks. I do think everyone is different though particularly because everyone's surgery at the antimosis where the urethra and bladder connection is made is unique to each individual surgery and probably skill of the surgeon. I was certainly jealous of all the guys who had no leaking from cath removal..but I think that is usually not the case following the robotic. Oh here are my stats and path...haven't posted for a while.

52 years old
PSA 9/09 7.25
PSA 10/09 6.125
Diagnosis confirmed Oct 27, 2009
8 Needle Biopsy = 5 clear , 3 postive
<20%, 10%, 10%
Gleason Score (3+3) 6 in all positive cores
11/09 Second Opinion on Biopsy slides from Dr. Koch
(4+3) = 7 5%
(3+4) = 7 10%
(3+4) = 7 10%
Endorectol MRI with Coil - Indicated the Palpal tumor was Organ confined
da Vinci 12/29/09 - Dr. Hollensbee & Scott
Post Surgery Pathology:
Prostate size 5 x 4 x 3.5 cm Weight: 27 g
Gleason: Changed to (3+4) = 7
Primary Pattern 3, 80%
Secondary Pattern 4, 18%
Tertiary Pattern 5, 2%
Tumor Quantitation:
Greatest Dimension, Largest tumor focus: 19 mm
Additional Dimension 18 x 15 mm
Location, largest tumor focus: Right posterior quadrant
Multifocality: Yes
Greatest dimension second largest focus 10 mm
Location: second largest focus: Left Posterior quadrant
Extraprostatic extension: Yes
If yes, focal or non-focal: Nonfocal
If yes: location(s) right and left antero-lateral
Seminal vesicle invasion: No
Cancer at surgical margin: No
If no, closest distance with location: less than 1 mm, right posterior quadrant
Apex involvement: No
Bladder involvement: NO
Lymph-vascular invasion: No
Perineural invasion: Yes
Lymph nodes: 9 from right pelvic 0/9 positive
Stage: pT3a, pNo, pMX
All nerves sparred - found two additional pudendal arteries

FIRST PSA TEST 2-11-10 <0.1 NONDETECTABLE
Virtually Pad free 2-20-10
Next PSA scheduled for 5-26 Results 6-2-10

Randy in Indy

JR1949
Posts: 230
Joined: Jun 2009

Okay, I admit I am somewhat envious of You Dry Guys. I realize that everybody's story is different because of type of surgery and skill of surgeon.

I am 61, had PSA 22 & Gleason 7 and 12 pin biopsy all malignant preop. I chose radical prostatectomy because seemed best procedure for me. Surgery was March 2, 2009. I admit I have not done Kegels as often as I should. First few months postop I was using 5 or more pads per day with diaper and getting up to pee 3-4 times overnight and having some accidents. I drink only caffeine free coffee and colas and drink plenty of water most of the time (average 4 glasses per day). Currently I am using 3-4 pads per day with diaper too. I still get up to pee some, usually once but occasionally none overnight. However last two nights I had to get up 3 & 4 times....very puzzling. I still have stress incontinence from standing a long time or just sitting on toilet to change my pad. Also I still have leaks, but if I have been sitting in a chair and get up I get this somewhat painful urge to pee NOW. I try to make myself get up to pee every 1-2 hours and as soon as I get up, POW here comes that "I gotta go" urge just like when my prostate was enlarged.
Another problem that I have is I can be sitting or walking around and not feel the urge, but when I feel the urge to pee I discover that my pad is full. Needless to say I am very frustated. Yes, I had rather be alive now, but just not very fond of incontinence. There has got to be some treatment, therapy, surgery, something.

I see my urologist for 6 mo. checkup on Monday and plan to discuss in depth all of these
incontinence problems with him. When I talked to him in October he thought that best solution for me would be putting an inflatable ring around uretha and putting a pump device in my scrotum which you have to squeeze. I cannot see how that could not be somewhat painful if you have to squeeze your ball sac...not an option. I plan to ask him what my options are. If he can give me nothing except scrotum pump then I shall seek a second opinion.

Any suggestions, help, advise will be appreciated.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I know they have come a long way with surgery on incontinence. I would recommend researching the heck out of it and I bet you will find a solution. They are coming up with new ways to fix that problem every day...someone here probably has done some extensive research and could lead to some good discussion.

Randy in indy

mikey51
Posts: 17
Joined: Apr 2010

I know of a guy that worked with my son that was 60 when he had his RP and it took him over a year to get most of his control back. So, I know you are feeling a bit desperate, but try not to let it get to you.

Also, I would DEFINITELY get another URO opinion if that scrotum pump thing is all yours is recommending. There are artificial valves, man-sling, and other treatments that are known to work well if natural control doesn't return sufficiently for you. So - bring these ideas up to your URO on Monday.

I'll be sending you good vibes and keep you in my prayers for a new outlook on Monday!

Mikey

gumbyrun's picture
gumbyrun
Posts: 52
Joined: Dec 2009

I had my daVinci on 2/24 and have slowly evolved to dryness! Give it some time.

Trew
Posts: 892
Joined: Jan 2010

I hate to tell you this gumby, but 2 months sounds very fast to some of us. Makes me wonder about my doctor- I'm sure the problem can't be me.

JR1949
Posts: 230
Joined: Jun 2009

I saw my Uro today and we discussed my situation and options. Dr. said that there might be some scar tissue on uretha from the surgery. I am scheduled for scope May 21. This could lead to removal of scar tissue. He told me one option is the artificial sphincter with the scrotum pump which I do not want. Another option was the man sling. I hope problem is the scar tissue and removal of that may be the solution. I feel better now and am anxiously waiting for May 21.
Thanks for the good vibes and prayers. Hope all goes well for you my friend and by the way sending good vibes your way and putting you in my prayers.

harvs
Posts: 54
Joined: Jun 2003

Not as bad as it sounds. Works great. After healing - no pain or discomfort.

Trew
Posts: 892
Joined: Jan 2010

I have been debating this issue in my mind now for weeks. For me the pump/value sounds much better than the sling. There as been some discussion on this two solutions in recent months. I am going to discuss this with my uro this Thursday.

The stress incontinencey is just too much for me to deal with much longer.

JR1949
Posts: 230
Joined: Jun 2009

Thanks Guys, I appreciate all of the help, tips, words of encouragement and thoughtfulness of all of you guys re my incontinence. Yes, Life Is Good :)
MANY THANKS TO ALL.

Trew
Posts: 892
Joined: Jan 2010

JR, go look up this topic on this discussion board: AMS 800 artificial urinary sphincter

Lots of useful info on the "inflatable ring around uretha and putting a pump device in my scrotum" thing you mention above.

I will be talking to my urologist about this very topic whenI see him this week.

I am 13 months out from devinci and still having problems.

Hoosierdaddy's picture
Hoosierdaddy
Posts: 16
Joined: Mar 2010

After RP on 12/21/09 (Dr. Koch at IU-Indpls., gleason 7/PSA 10) at age 55, I was fortunate or had a good surgeon on a good day or all the above--I was 90% continant upon catheter removal; a week later 95% of where I was pre-surgery. The remaining 5% has been slooow. My brother had RP 1/6/09 (Dr. Miller in Atlanta, gleason 6/PSA 8) and had essentially no control for 3 frustrating months, then suddenly it got much better, and after 6 months he was at about 95%. So it's different for everybody. My bro said the kegels helped a lot.

YerBlues
Posts: 5
Joined: Apr 2010

When I had the catheter removed, two weeks after surgery, I was surprised how little control I had. They put me in a Depends for the ride home and I thought I was going to flood the car!

Then I got really bad "Diaper Rash" and had to stop the Depends after about a week. Switched to the guards and that was much more comfortable. I did kegels almost all the time (well, three or four times a day) and it did help alot. By about 4 months I was pretty much dry all the time and have been out of all pads since mid February. I still get painful spasms if I let my bladder get too full.

Of course I get reminders like yesterday when I picked up a ball and threw it a little too hard, whoop! dribbles!.

Stick with it, it does get better.

Jo

JR1949
Posts: 230
Joined: Jun 2009

Mikey, I used to have 3 cups of coffee most every day. After I had my prostate surgery and of course the incontinence I read somewhere that caffeine is not a good thing for people with bladder control issues. I now have my decaf coffee with breakfast and occasionaly have a second cup mid morning. I now drink more water and drink only decaf colas at home. When I eat out I ask for either Sprite, lemonade or root beer, whatever they offer. I do not drink beer or wine. It has worked for me.

bobshell1956
Posts: 18
Joined: Dec 2009

Had the catheter removed at 11:00 today and went through one pad in 2 hours. It's like I have no control over the bladder. I'm really down in the dumps over this. I know I need to give it time. Pathology was not yet ready. Looking for info on the kegel exercises (website or book).

Thanks to all of you who have posted to my pleas for help in the past.

142
Posts: 169
Joined: Dec 2009

bobshell,

It took me about eight weeks to get down to a reasonable pad "consumption" - mine was real bad (7-8 per day, 1 at night), and still is not great (1 & 1), but it seems like I am among the worst.
It will get better, but yes, it is really demoralizing for now.
I used a Depends pant with a Walgreens male guard inside - that way at least when I blew out the pad I had a bit of backup. Change pads often and you might get through the day on one pant, while still staying generally dry.
The Walgreens were the most absorbent guards of those I tried (I have sevearl postings from Nov/Dec 09 about pads, quality, and the like).

Here is one site with instructions, but there are a lot of them, and I won't advise one over another:
http://www.kegelexercisesformen.com/index.html

It will get better.

-------------
DaVinci - 10/09

JR1949
Posts: 230
Joined: Jun 2009

142, I have read serveral postings on this discussion board so I went to local Walgreens and only pads I could find were pads for women, but in my mind pad is a pad. They are wider than Poise pads I was using and allow me to now wear my Fruit of the Looms instead diaper. I didn't ask store clerk, but do they sell pads for men too?

Trew
Posts: 892
Joined: Jan 2010

Only I was on the hormone shot and my emotions were dropping anyway. And the dumb PA gave me no warning about what was coming with the shot. When I had the cath pulled urine was running like a stream. My doc standing there said do your kegels. I said, "I AM!" And he then said, "Well, you must be doing them wrong." I used 8- 10 pads a day for three weeks and then the hormone shot.

Man, I hate this PC thingie!

Now, 13 months after surgery, 3 months after rad, I am having a lot of stress incontinency. I kegel often. I am starting to hate kegels, too, along with pads.

so it goes.

I see the new doctor this thursday. New start.

lion1
Posts: 240
Joined: May 2007

All,

Just to summarize what I heard and how to cope:

1. For the guy who is still leaking 9 days after catherer removal----chill out!
I have been incontinent for 4 yrs.

2. For the guy who said their doctor was skilled. Well guess what, I had one of the best and foremost on LRP's. It wasn't his fault I am incontinent.
3. What is truly causing everyone's incontinence?-Guess what? Everyone is different- some of you may have an overactive bladder and your URO MAY NOT TELL YOU THIS OR DISCOVER IT FOR A YEAR DOWN THE ROAD.
4. Why am I hearing that some of you state you may want an Artificial Sphincter and you've been incontinent for barely a year. The truly good surgeons will tell you let the body do natural healing for up to 2 years. Then go to the next steps.
5. Yes, do the URODYNAMICS AND kegels that your URO prescribes.
6. I had Botox injections with no help. I'll do the Botox again in 3 months. If that doesn't work my Doc may do an Implant to send electric impulses to the bladder. If that doesn't work maybe I'll look at a Sling and as a Last resort maybe an AUS 5 OR 6 YRS FROM NOW.
7,I am 50 and very active, but I don't let the leaking slow me down and I surely am not going to have surgeries until I have followed the stairway to the most univasive cure.
8. Maybe, if some of you who are just a few months incontinent wait a bit, there could be new treatments and you won't have to have anything implanted in you.
9. With all this being said, everyone's tolerance levels are different.
10. Also please find out what is really causing your incontinence before you have needless surgeries.
11. Finally. I hope you're all dry in the near future, because incontinence STINKS!

GOD BLESS..................LION1

gumbyrun's picture
gumbyrun
Posts: 52
Joined: Dec 2009

Had a busy week so far at work. I am in sales but assist with installation of my product which can be physical. Pulled on a rope yesterday and squirt! I guess I'm 95%.

JR1949
Posts: 230
Joined: Jun 2009

Lion,
I agree, incontinence really STINKS. I told my wife, it's really a pain in the rear end and demoralizing and not to mention really annoying having to deal with it like when you go to a movie and have to run to the restroom in the middle. (See my posts on this block of comments above.) Kegels seem to help. I am having a scope procedure on May 21 and my plan of action is to see what is causing the incontinence before I have any needless surgeries or implants. (See my posting above "Uro visit today" dated April 26.)

JR

Trew
Posts: 892
Joined: Jan 2010

I am getting scoped in the morning, I believe. I'm all excited- I can hardly wait! Nice word on an incontinency thread.

And certainly the pun was intented.

And I agree- Incontinency stinks! I will have a serious discussion with the uro in the morning.

Signed, Trewly Immodest (by now!)

mikey51
Posts: 17
Joined: Apr 2010

And your right. Thanks for the kick in the pants. I am learning to be patient and I really appreciate your story and insight.

Mikey

mikey51
Posts: 17
Joined: Apr 2010

bobshell -

Your gonna be like this for a while. Be patient, your at a real tough stage mentally and still got lots of healing to do inside. Almost all of us have been and even still are right where you are!

Your on my prayer list now too!

Mikey

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