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Posted 7/1/2013 9:54 PM (GMT 0)
Hello all. This is my first post here. I had a salvage RP in April and just today had the Foley catheter removed. The anastomosis was slow to heal. The doc didn't give me any warnings, but the nurse told me that if I hadn't used the bathroom in 6 hours to go to the ER. It's been about 4 hours and I haven't yet felt the urge or been able to urinate. But I'm leaking plenty in the pad.

I'm not going to the ER for nothing, and I think the leakage is handling the urine disposal. Her warning has me spooked though.

Any ideas?

Thanks,

John
Posted 7/1/2013 10:13 PM (GMT 0)
I had RALP at end of May and had folley catheter for just eight days, when removed I never felt the urge to urinate first couple of days, but I leaked constantly first few days. First time I felt urge was 2nd night after sleeping 90 minutes, woke up as my bladder felt like it was going to burst, (it was prob 10% full for first time in over a week). Just my opinion but if your leaking and your bladder doesn't hurt, you probably don't have stricture.
Posted 7/1/2013 11:02 PM (GMT 0)
John,

Welcome to the forum. Sorry you find yourself here but glad you found us. Hope we can help.

If you are leaking and not uncomfortable I wouldn't worry about a stricture. If you get increasingly uncomfortable then you can worry but it doesn't sound like that is happening. I think the nurse was talking about a different situation. For my first week after the catheter came out I had no control at all. I never had to go because I leaked faster than the urine accumulated. That got better, by the way, but it can be slow.

Somebody is going to ask you this, it might as well be me... Salvage RP? What was your primary treatment? Salvage RPs are kind of unusual. We'll all be curious to see how you do.

Let us know how we can help.
Posted 7/1/2013 11:39 PM (GMT 0)
Thanks for the replies! I had Gleason 7 in 2007 and had IMRT external beam radiation in early 2008. PSA stayed at .5 for several years and started to climb to around 1.0 last year. Consult at MD Anderson last Feb revealed that salvage brachytherapy was not an option. By surgery I was at a Gleason 9. The great docs at MDA are some of the few that can do salvage RP. Very difficult to operate with all the scar tissue, but appears that I had a good surgery. God blessed me with this care.
Posted 7/2/2013 2:14 AM (GMT 0)
You are the only person I know that ever had salvage RP, most surgeons won't attempt it. Understand the catheter part, due to endless stricture issues, I was on a constant cath for 63 days after my surgery.

Hope you ultimately heal up fine.

david
Posted 7/2/2013 3:00 PM (GMT 0)
welcome to our corner of the world. Sorry you need to be here.

sounds like you're doing okay.

Hang in there. Hopefully it gets better as it heals.

All the best,
Andrew
Posted 7/2/2013 9:42 PM (GMT 0)
I was weeks before I had a real "urge" You pee kind of like you're on memory and get all the scabs and crap out. Gatoraide and lots of it...pee pee pee and leak leak..It gets better. Stop drinking 8 ish if you are in bed by 11...


When things heal up a little the kegals will help the leaking. That real strong urge though is gone...and you'll go a lot until you stretch your bladder...but wait on that a few weeks.
Posted 7/2/2013 10:12 PM (GMT 0)
Hope this passes for you soon. I am sorry you're going through it.
Posted 7/3/2013 12:20 AM (GMT 0)
It sounds to me like you're ok, and I agree with the response from Peter earlier.  If there's any question, you can always call your surgeon/urologist to check before making a trip to the ER.  There should be a doc on-call if they are not available. 

Welcome to the forum and all the best to you...Tim

Posted 7/3/2013 2:34 AM (GMT 0)
Welcome aboard, John.
Salvage surgery! Boy those guys at MD Anderson are pretty good. Glad to hear the surgery went well!
If you are leaking a lot, it sounds like the plumbing is working ok. Your mind just needs to catch up with your body.
Hope the rest of your surgery is uneventful.

Good luck

Bill from Florida cool
Posted 7/4/2013 3:04 AM (GMT 0)
Thank you all so much! It's so easy to get pulled into a whirlpool of worry. Reading cases of urinary retention after catheter removal (just Google it) doesn't help either.

All the best,

John
Posted 7/6/2013 12:52 AM (GMT 0)
Who was your surgeon? I have mine removed there.
Posted 7/6/2013 3:44 AM (GMT 0)
Dr. Pisters. He is a superb surgeon and great to deal with.
Posted 7/6/2013 4:35 AM (GMT 0)
Next time you see your regular doctor, have someone show you how to self-catheterize..It's worth the peace of mind being able to do that and not have to do the ER thing....

It is VERY rare to see someone who has undergone surgery AFTER undergoing radiation treatment..Please stay with the forum as others will be interested in your journey as it progresses..
Posted 7/19/2013 11:52 PM (GMT 0)
Hello all,

Three weeks out from catheter removal. Still not peeing normally, but MDA folks tested me and said I was ok with urine retention. Back to work full time. I have a three month reprieve until I go back. My second PSA at 6 weeks post RP was undetectable.

BTW, I'm also a member of the G9 club, but docs aren't recommending HT or anything else now.

Thanks for the support.

John
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