HealingWell
Search Close Search
☰

day 15

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/25/2013 9:18 PM (GMT 0)
I wish I would have found this site about three months ago. at this point, I had my prostate removed on the 10th. Yesterday, I went for my followup and to have the catheter removed.

I was searching on the term "perineural invasion is present" and found a good thread here. Although, my doctor went over almost all of the results, he did not discuss this particular diagnosis. I have a call into him. From what he said, all other indications are good.

Today, beyond that bit of information, I am having trouble coping with the constant leaking and urination. When they remove the cath yesterday, I was able to start and stop my stream fine. But I am finding I cannot stop the continual leak. The more I try the kegels, the more I leak. UGHHH

Thanks for reading
Posted 6/25/2013 9:28 PM (GMT 0)
Hello,

So is it Rick from Texas? Anyway...

Hello Txrick,

Welcome to the club that nobody really wants to join. Glad you found us.

It sounds like you are doing great, actually. Any number of long-term leakers will be along momentarily to tell you how lucky you are to have any control at all one day after the catheter comes out.

Perineiral Invasion means that the cancer seemed to like to grow along nerves in the samples of your prostate they looked at. It's better not to have that since it is a way for the cancer to grow out of the prostate but if everything else is OK it's not that bad an indication.

Continence will take a while but you are doing better than most guys and we are jealous. There is such a thing as too many kegels. You want to only do a few sets a day (your doctor should have told you how many) and if you do a lot more it will only make your leaking worse. Your urinary sphincter is a muscle and when it gets tired it gets tired.
Posted 6/25/2013 9:37 PM (GMT 0)
Welcome to Healing Well. I found the site 2 weeks before my surgery but you will have plenty of other questions in the coming weeks that we can all help you with.
The symptoms you are having are normal after the cath is removed. You tend to leak more standing up and in the afternoon when your body tires.
Most of us used the Depends briefs and a pad inside the briefs. That way you can change out the pads as needed and leave the Depends on unless it gets too wet also. It is a side effect that comes with surgery. Your doctor should have explained that to you. The sphincter muscle by your bladder was removed with your prostate so you need to do the Kegels to strength your other sphincter muscle at your pelvic floor. Don't over do them like I did, it will only slow your progress. Usually 3 sets of 10, 10 second Kegels are what the doctors order. One set in the morning, one set at lunch and one set at about dinner time.
I am sure many others will be along to welcome you soon.
Good luck and welcome to the other side,as we say here.

Bill from Florida cool
Posted 6/25/2013 11:54 PM (GMT 0)
Thanks for the feedback guys. It's a difficult and difficult to discuss, I appreciate you and this forum

Rick from Texas
Posted 6/26/2013 12:48 AM (GMT 0)
Welcome, Rick. Sorry you needed to join us, but happy to have you here.

The negative margins outcome in your signature is great. Congrats.

Time and kegels (not less and not more than the doc says) is the path to getting your leaking under control.

-Gedman
Posted 6/26/2013 2:58 AM (GMT 0)
Thanks Gedman. And thanks for all of the information you have provided in your journey.
Posted 6/26/2013 7:26 AM (GMT 0)
Peterd, which is why it has diagnostic value on a biopsy. It is controversial, once you get negative margins, whether it has diagnostic significance. There are much more PNI in post op pathologies, then there are BCR's. This forum seems to be divided on it. I was going to start a thread om post op PNI, but but feared it would turn into a mess of truths , half-truths and no truth, so decided against it . May be some of the topguns will, and topgun is a respectful term.
Posted 6/26/2013 11:41 AM (GMT 0)
TXRick

I'm only a week or so ahead of you, had my RALP on 5/29 and catheter out on 6/6. I remember I was so looking forward to getting rid of cath, got home and hopped in my car and drove around the block, as if to reassert my independence! By that evening the mood had turned, with the constant leaking, I was changing depends and pads on the hour, all night long as well. Went on forum and got some encouragement and began my Kegels the following morning.

I'm going to fast forward here and tell you within seven days I was down to 2-3 pads per day, none at night. For the last week I've been pad less but instead stick a small folded wash cloth in my jockey shorts if I leave the house for over an hour, only leakage now is from a hard cough or sudden unusual move, sliding out of restaurant booth sometimes.

Hang in there improvements sometimes come surprisingly quick & when you least expect them!
Posted 6/26/2013 10:40 PM (GMT 0)
Richp14,

Thanks for taking the time to share your experience. I find all of the feedback I have received very encouraging.

Seeing a slight improvement today although that might be due to cutting down on my liquid intake. Still, I felt comfortable enough to pop into the office for an hour today although I won't try that again the rest of the week. I spoke to my surgeon today who suggested a physical therapist if I felt the need.
✚ New Topic ✚ Reply