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Incintence Type? 2 years after radical prostectomy

JayC's picture
JayC
Posts: 2
Joined: Jan 2016

I have tried reading up on the different types of incontence that are common after radical prostectomy.  Its roughly 2 years since my surgery.   PSA < 0.1 so that part is great.  Before I had the surgery I had to rely on CIC (Catheters) to void.  The cancer just made it impossible to urinate.   Post op I had really bad pain that was found to be some metal parts (Surgical clips?) in the bladder.  *I have no idea if this has anything to do with anything.  So the sort of problem I see is that urine stream is very strong and usually it takes almost no time to void then after I've gone I get leakage usually shortly after voiding.   Like seconds to minutes.  Its enough to be a real bother sometimes.  (Pants wetting) other times drips enough to make me not want to wear anything white for underwear and at some times almost nothing.

I've tried to urinate and  Wait.  relax and fully empty the tank and sometimes I am able to void more but it seems like the problem is not emptying the tank and then when I'm not thinking about it I'm wet.  Bedtime seems to be the worst but it can happen during the day.  Maybe Bedtime is more obvious to me...

Any idea what this would be called?  I've lost insurance *Don't ask... Its messed up and seriously depressing to deal with. 

Since I'm aprox 2 years out from surgery I imagine I'm stuck this way.  I tried condom catheters.  This works but its a lot of stuff to sleep in the bed with.  I spoke to someone who thought my problem was having urine left in the bladder after voiding which is apparently a bad thing and said this might mean going back to caths CICing.  That would be better then wearing all the condom catheter stuff all the time and a little less embarrassing. 

The one size up from smallest pads seem to be able to soak up the amounts I leak but they all seem to give off weird smells.

Any thoughts Ideas or suggestions?

Swingshiftworker
Posts: 1013
Joined: Mar 2010

If your incontinence does not resolve itself or cannot be fixed in any other way, your only other option is getting an AUS - artificial urinary sphincter. 

The devices aren't fool proof or trouble free (just read some of the threads about them here) but, if you've lost normal control, that's really your only option. Problem is, if you lost your medical coverage, it probably is a very expensive procedure that you will have to pay for out of pocket.  Great (or least no barrier), if you've got the $.  But, if you don't have enough $ to do it in the US, you may be able to get it done cheaper in India, Thailand or other countries.

Good luck!

 

 

 

Will Doran
Posts: 207
Joined: Sep 2015

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

JayC's picture
JayC
Posts: 2
Joined: Jan 2016

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...

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

JayC

I am sorry for the incontinence issue and the negation in your appeal to the insurance company. These guys are never there to pay to the “little ones” when we need them but they are never “deaf” when approached by big institutions or hospitals. I wonder if Dr. DS Elliott of Mayo Clinic, above, can help.

Mayo is big and is in touch (everyday) with almost all insurance companies and these may give more credit if your appeal comes from them. It seems that Dr. Elliot is a well experienced surgeon wishing to help and worth to consult. The insurance would include his fee in case he succeeds in getting an approval.
Just give him a call to verify possibilities.

Several survivors in this forum have reported about the incontinence issue. You may find past threads discussing their experiences (and solutions) on the problem. You may even try to mail them a note via CSN-mail service.

Best wishes for a solution.

VGama

NOTE: Mayo's Dr. Elliot post was deleted from above after my posting. It may have been flagged by someone because it look like a commercial.

 

ElliottDaniel's picture
ElliottDaniel
Posts: 5
Joined: Jan 2016

VascodaGama,

Thanks for your post.  The post issue has been sorted out with CSN.  I posted in an incorrect format, therefore, all my posts were deleted--which ended up costing me several hours of wasted time to sort through.  Information posted on this website needs to be based upon experiences related to either the cancer or my experience treating the cancer.  In my experience, male incontinence following prostate cancer treatment (whether it be radiation or surgery) is devastating to a man and his significant others.  Every man must be very thorough in his research into all the various options available to him.  These support group websites can be a great source of information.  But I strongly encourage every man (and his significant others) to search out the best care options and the only way to do this is to educate themselves the best way possible.  Patients need to ask their surgeon really tough questions such as how many procedure they do a year  and the results and compare these results with other surgeons.  In my experience, the patient who seeks out several consultations from several different surgeons (and not necessarily from the same town) that those individuals will be able to find the best doctor and the best information regarding their medical condition.

 

DS Elliott

Will Doran
Posts: 207
Joined: Sep 2015

JayC,

I also have that same problem.  I "go" (it's like-'open the flood gates').  Then right as I am getting my pants zipped up, I have to "go" more. So, I just wait until that sensation occurs and "go" more.  Sometimes it's two more times after the main "go".  Sorry this sounds so dumb, but there is no other way to describe it.  After my Robotic Assisted Prostatectomy, and after the cathater was out I didnt' seem to have this, but had an almost constant leak instead.  My doctors said that was because of the fact that they had to make an incision in my bladder to get the prostate removed (prostate was adhered to the bladder).  After the PT, things got better to the point I'm at now, and I guess I've learned to live with it.   

I'm so glad you didn't have to have follow up Radiation and Chemo after your surgery.  You can be glad for that. I was a very high Stage 3, and they treated me as though I was an advanced Stage4.  My doctors still think some of my leakage problems are from the Lupron.  As I get closer to the end of my last Lupron shot cycle, I think the leakage problems seem to be less of a problem.  You mentioned all the clips, clamps and whatever else they put inside us.  Yes,  They all show up in MRIs, CT Scans and Bone Scans.  Again, my doctors warned me that that "junk" could cause some leakage, etc, until the nerves regained strength and control. As time went along, the sutures in my bladder disolved and I passed some of the pieces. As that happened, again, things seemed to get better.

I understand about the Insurance stuff.  When my insurance questions stuff, there are ways to get exceptions.  As someone else suggested.  I ran into that with my PT for my muscle and nerve problems in my legs from the Lupron.  There are ways of getting exceptions and getting coverage. That's what my Physical Therapy /Gym did and it worked. 

Hang in there

Peace and God Bless

Will

 

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