Recurring Incontinence

Hi folks, greetings from Australia. Been lurking a while, but now time to seek some views.

Had a LRP (not robotic) 08/13. Gleason 4+3 capsule breached but seminal vessels clear and the 1 lymph node excised was clear.

Because it had broken the capsule, Uro suggested RT But wanted to wait until continence restored.

First post op PSA .03, six weeks later was .07 so HT started early December 13.

Continence virtually regained by late December. Pads used only for strenuous activities like golf etc.

RT started mid January14 and completed end Feb 14. Only minor SE's, continence fine.

Then early May 14 was doing some gardening and lifted 50 heavy paving stones from front of house to back. Some not unexpected squirts, but no big deal.

Should also say by this time I had slackened off on Kegels - didn't seem to be needed and just overlooked them.

about 3 days later, I fell back into fairly major incontinence. Didn't track amounts for a week or so, but then started to measure leakage and varied between 200mls and 300 mls per day.

Back into Kegels in a big way, but so far no improvement, in fact might even be getting worse. Dry overnight and not so bad when totally passive, but even mild exercise eg walking results in continuous leakage.

Now my question is, is this because of the RT or the strain of heavy lifting? Having pored over this forum for a while, haven't come across any other cases of continence failing after being dry.

My Uro is not keen to consider surgery. He tells me I would not be a candidate for a sling because of the RT, so AUS is only option and he regards that as major surgery only to be undertaken as a last resort.

This has really got me depressed. Suspended all golf and even reluctant to leave the house, and must say I am in awe of those people who undertake major activities - like overseas holidays - while heavily incontinent.

At 69, I regard myself as reasonably fit and usually very active. This has flattened me, and I hate it.

Would appreciate any views/opinions/advice.

Chas

Post Edited (Chask) : 6/26/2014 10:41:24 PM (GMT-6)

Chask,

Have you had a cystoscopy? That might give you and your doctor a better idea of what you are dealing with. Your problem could be caused by radiation cystitis, a not that unfrequent recurring problem after radiation. If that's what it is you can hope it will go away on its own.

I'm not sure that all doctors will tell you that because you had radiation you are not a candidate for a sling. I had radiation after my robotic RP and my surgeon is pretty bullish on a sling for me.

Thanks for the replies guys.

My post-op path report did state that "Tumour is present at the resection margin of the Bladder base" Gleasen score in this region was difficult to determine due to diathermy effect"

So I am guessing one of two things. Firstly that the RT was targeted to include the bladder base and that may be affecting things, or secondly, there is some tumour in the bladder itself.

Yes Peter, I am scheduled for a Cystoscopy next week. Main reason for that is that I also have a very weak urine stream and Uro thinks there may be a constriction at the bladder neck, which he can dilate, or if there are urethral strictures, he will refer me to another surgeon as he does not specialise in that procedure. Should mention that weak stream was there post op, i.e. pre RT, so not caused by RT. That may have been caused by my post op catheter becoming dislodged overnight, and having to be removed and replaced. A very unpleasant experience as the dislodgement resulted in massive urinary retention and there was great difficulty removing the catheter. Pain akin to a kidney stone.

It's all a bit ironic really as I had a strong stream pre op. Quite the reverse of what most guys have, weak stream pre op and strong stream post op.

Sorry about the incontinent thing. I have been there and done that. It does really freeze your life.

Several things I did. I wore a condom cath. and leg bag for a long time. Got really good at it. Enabled me to move around while we worked things out. Had a long tube a and floor bag for the night. Able to sleep all night. Traveled, air and drove. Just could not wear shorts.

Kegals and the such did nothing for me. When I took a shower, and walked across the bathroom floor, I dribbled. When it hit the bottom of the bladder, it came out. I leaked all the time. And had a empty bladder.

Later, I did receive the AUS. Love it. 6 weeks of the sorest balls your ever have. But once done, never go back. A few guys blog about their experiences. Just post a thread about the AUS and they will chime in. Make sure you use a surgeon that has put a lot of them in.

Good luck on your decision making.

NEO

The condom cath. is not a romantic thing that is for sure, but it kept me dry and if I had AUS issues, I have a box of them in my storage whse. Never say never.

The AUS though, is the way to go if nothing else.

Did not understand the Bladder Cancer concern. I discovered Prostate Cancer from my bladder cancer pathology. It never came up on the radar before then. But, a lot of BC guys were detected with PC post op from BC surgery. Something there, but the docs do not think so.... hmmm

Hope the best. Let us know any info.

NEO

Thanks BigMac.

Have read many good things about AUS and will push for that if necessary.

Guess my Uro is being cautious at this stage (incontinence only returned 2 months ago) and doesn't want to subject me to further surgery unless essential.

I can live with that, but am not overly confident that things will improve without intervention. Have been Keegling like fury, hopefully not overdoing it.

Incontinence is very variable. Yesterday lost less than 100mls, but other days have been over 300. Today looks like being around that. Very frustrating, but as I have often seen in this forum, "it is what it is" and I just have to live with it - for now.