Incintence Type? 2 years after radical prostectomy

Will Doran said:

Physical Therapy

JayC,

During your surgery, were there any incisions made in your bladder?  Are you on Lupron?  Are you up many times at night?

I was a very early Stage 4 with a PSA of 69 and no symptoms.  One very small (undetected by MRI with contrast imaging) spot in one lymph node, and 40% of prostate involved.  I had robotic assisted surgery on Dec 10, 2013.  During the surgery it was necessary to put an incision in my bladder to remove the prostate.  My Prostste was adhered to my bladder (birth defect). Thus an incision was necessary to remove the prostste.  I couldn't have had radioactive seeds implanted because of this situation. Post surgery, I have been on Lupron for two years and had 8 weeks, 5 days per week, of radiation.

I was having trouble with leakage. It was almost constant.  My doctors sent me to Physical Therapy.  I went in twice a week for 6 weeks.  I was given exercises to do (Kegels, plus inner core exercises).  I am now two years post surgery with my PSA remaining a <0.010.  I have gone back to PT to work on leg muscle weakness from the Lupron.  Again, I'm doing daily inner core exercises, and continue to do the Kegel exercises.  The leakage is almost gone.  However, I do still have problems when I do my 90 - 100 minutes per day of stationary trainer bike work, and sometimes as I'm doing my heavier weight lifting exercises at home. The drips occur as I get tired at the end of work out sessions. Overnight and during the rest of the day, I have very few problems unless I get to goofing around and forget to concentrate on control.  Usually from laughing or something like that.    I have been discharged from PT and am now going into the Gym at the facility twice a week and doing heavy workouts on the weight machines.  I now have no leakage problems as I'm working out at the gym.  I am now in my last month of my last Chemo Shot (Lupron), after two years on the Lupron, and it seems that every day I have less leakage.  There were times that I'd be up 8 - 10 times per night.  This was after the surgery.  I'm now up about 4 - 5 times per night.  It is hoped, by me and my doctors, that as this last Chemo wears off, that I will be up even less at night.  This leakage and frequency at night can be part of the Lupron in some patients.  We are all different in our situations.  I still wear a pad as a precaution.  That isn't a problem considering the alternatives.

I would recommend that you talk to your doctors, and see if you would get help from trying Physical Therapy.  It has helped me very much. It's not perfect, but nothing is these days.  If you are on Lupron or some other form of ADT and are or will have radiation treatments, these leak problems are part of the situation for some of us.  However mine is getting better by the day. PT is coverend by Insurance as post surgery treatment.  It would be worth your time to try it, if your doctors approve. 

Good Luck.  Best wishes for the New Year.

Peace and God Bless

Will

Thanks for the replys.  Its annoying to deal with.  I've done kegals a plenty and I think that this helped after the surgery to go from serious leakage to this medium pad level leakage.  I don't (think) I have any problems with frequent night time trips to the bathroom.  I have insomnia and take Ambien so there is a small chance that I'm going back and forth to the bathroom 50 times and don't remember.  The bad leaks are after I urinate.  Sometimes I've got my pants half way zipped up and if I'm quick enough I can unzip them and avoid the leakage.  Other times its a little later or when I climb into bed which really sucks.

Nope, I didn't need to do radiation or lupron.   I opted for the radical prostectomy to try to have the best chance of digging out all of the cancer.  The metal widgets that were in the bladder were really painfull and I didn't get those removed for months.  (I thought it was just post op pain)  Anyway I'm thinking out loud here but I wonder if those were there to clamp the urethera to the bladder and they fell out inside the bladder?  Or if that irritation was some part of my problem?   I'm also pondering the time I was CICing because the prostate had gotten enlarged enough that it totally blocked the urethera.   And maybe the bladder got?  Looser?  Stronger?  Smaller?   I do recall being told by the Urologist that I had a small bladder.  Anyway cathing several times a day was not too fun.  At least until I switched around to the right devices where it became doable but still embarassing.

As to doing any surgery out of pocket - OMG Thats really not an option.  I'm in an amazing insane insurance nightmare and right now I have a hard time believing there is a worse situation then the one I'm in.  I'm on appeal number 2 and have been up until 3 AM trying to recreate how we got on a plan that screwed up everything and made everything out of network.  I think insurance is worse then the cancer diagnosis.   *No kidding!  This is depressing...