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14 months after RP and considering Sling

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Prostate Cancer
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Posted 5/23/2016 8:10 PM (GMT 0)
I'm currently experiencing leakage between 3/4 ounce to 3.5 ounces most days. Occasionally I'll have a high day of around 6 ounces but this will usually be after 2-3 hour workout including 5 miles light jogging. Alcohol can also trigger these heavy days also. I have recently completed 5 weeks of physical therapy. My surgery was done by one of JH best and was nerve sparing without complications. Some days I will feel like I'm about dry and then back to leaking. Looking for any advice on how to select a sling surgeon, thoughts on my timing on this, and any other advice. Thanks for good advice in the past John
Posted 5/23/2016 8:28 PM (GMT 0)
John,

I don't have any particular advice on picking a surgeon for a sling...as with any surgery, you want the best working on you, so maybe back to JH. Ask your RP surgeon.

But your case just helps to demonstrate exactly how entirely random the side effects of RP are...don't you think so, too?

You were a low-risk case (based at least on the info you posted here). You went to one of the best institutions in the world. You had great pathology. And now you are looking at another hospital visit, another surgeon, and more risk just to address one of the side effects from your last surgery. Dang. You did everything right that you could once you selected an RP for treatment, and I'm pretty certain you weren't counting on all this as a secondary outcome.

I feel lucky. My case was not low-risk...it was favorable-intermediate risk, so worse than yours. Pure and simple luck, I'm essentially fully continent. Pure luck. I think the luck factor is one that newbies under-estimate. They hear from guys, "oh, I was fine (eventually), so you'll be fine, too." Yours is the case they need to hear about. Pure luck.

Well, good luck pursuing a sling. Check at JH.
Posted 5/23/2016 8:54 PM (GMT 0)
John,

Sorry to hear about your problem. You'd think one surgery would be enough to have to endure, but it really is the luck of the draw.

I don't think it's too soon to take action on this. Incontinence is maddeniing and life is short. Do it. I know a guy at the Cleveland Clinic who is excellent if you want to travel, although I think this is probably the kind of surgery you'd want to do close to home. Email me if you want my info though.

Best,

Jonathan
Posted 5/23/2016 10:31 PM (GMT 0)
I'm a year and a half out too. I have been told bike riding does a good job on the right muscles. I've added this but honestly only do once every few weeks. Alcohol will run right thru as I guess it relaxes those muscles. The little leaks, even after shaking drive me crazy but I deal with it.
Posted 5/23/2016 11:18 PM (GMT 0)
Hello MK2.0. Did you have a RRP? Are you still seeing any progress with leaking? How much a day do you leak? Thanks for the post and good luck?
John
Posted 5/24/2016 4:52 PM (GMT 0)
John! I'm 4 years out from the Advance sling install and still not a drop, this was the solution to my 2-4 pad per day leakage. The leakage had changed my lifestyle so drastically that I decided it was time to look for a solution. I had mine done in Toronto by a surgeon that had done about 100 prior to mine, I did have to fly in and waited 3 days after surgery before flying home. I was very careful after surgery when it came to lifting or straining for 6 weeks as recommended while the mesh bonds with surrounding flesh.
The sling returned my normal lifestyle overnight and I kind of regretted waiting so long, it is however a decision not to be made lightly as involves surgery plus a healing time and not all patients are 100% dry. My sling was installed a bit tight so I have to apply a slight upward pressure on my perineum area to pee however this is easily done with one finger and is no inconvenience at all. I'm happy with the choice I made an also with the result...never think about it anymore but occasionally I recall the "olden days" of leakage and think what a fortunate outcome I had. If you have any questions just let me know.

Ron
Posted 5/24/2016 7:00 PM (GMT 0)
I have been reading the above with great interest. I had surgery on April 18, 2016, with the catheter removed eight days later. Since then I have been leaking about 9 oz a day with no signs of improvement. Every day starts the same, where it appears that I have turned the corner. However, after walking the dogs, etc., the flow starts. If I just lay down and not move there is almost no leakage...

I know that I am still early in my recovery, but it does get frustrating. The surgeon stated that most men will start to see small improvements in a matter of weeks. The radiologist is recommending I wait until I have better control before I start receiving scavenging treatments. However, he said that, do to the advanced nature of my cancer, no matter what, I will have to start radiation. My worry is that radiation will "flatline" any improvements. Does anyone know if that is the case?
Posted 5/24/2016 7:04 PM (GMT 0)

Dr WHO said...
The radiologist is recommending I wait until I have better control before I start receiving scavenging treatments. However, he said that, do to the advanced nature of my cancer, no matter what, I will have to start radiation. My worry is that radiation will "flatline" any improvements. Does anyone know if that is the case?


This is exactly the comment that many here have made before, and a general rule of thumb: let surgery heal and continence improve before undertaking RT if possible because it probably won't get better than that once RT is done.
Posted 5/24/2016 7:08 PM (GMT 0)
Doc Who, you're still barely a month out. Usually they don't start ADT until 6 months post surgery. That being said, a lot of guys talk about how the radiation creates other SE issues on top of..and sometimes instead of...the surgical ones.
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