Post Surgery - no incontinence - Side effects - Prostate Cancer UK Online Community

User

Posted 20 May 2014 at 10:31

I have been unsure whether to share here - for fear of being insensitive.

However, I feel I will for those who visit and are terrified as we were about all the side effects of surgery (RRP)

S. my other half was continent right after the catheter was removed. Obviously we are so relieved and grateful. He's 54 so lucky to have age on his side.

I'm only sharing this as I saw someone reference that there is bound to be a bias on a forum towards the difficult stuff, that's just how it is, as that's what is needing to be shared. But I thought that it feels fair to new joiners to this site to know that this outcome too is a possible one.

User

Posted 20 May 2014 at 14:30

A success is always great to hear about - another one in the eye for prostate cancer!!

Those of us on the other side of the statistics may whinge a bit (well, quite a lot really) - don't worry about it.

Keep in touch, particularly with the ongoing PSA test results.

Tony

TURP then LRP in 2009/2010. Lots of leakage but PSA < 0.1 AMS-800 Artificial Sphincter activated 2015.

User

Posted 20 May 2014 at 18:52

Excellent news. I am still incontinent during the day - night is no problem - I would rather suffer the pads than have had my cancer spread. For me, it's a small price to pay. I know others will get more frustrated, but the alternatives are a million times worse.

Stay Calm And Carry On.

User

Posted 20 May 2014 at 19:44

first of all great news and inspiring to others. i have only heard of a few who have had the same experience. You must have started your pfes early!! hope this continues for you as you are one lucky man!!

i had robotic 6 months ago. first 4 weeks were a struggle but expected it. then suddenly incontinence reduced by about 75%. had to wear one small pad for 4 months and expected that to continue. Then one month ago i noticed i could do anything, laugh,cough, lift and no drips. felt confident to do without pads and been dry ever since. I must admit i expected a little incontinence for the rest of my life but am surprised and delighted that this issue has been sorted.

User

Posted 25 Jun 2014 at 17:01

just wanted to share my husbands experience

he is 4 weeks on from TWOC

6 weeks post open RT

he has been one of the lucky ones and is now 95% dry

no pads for over a week just the odd dribble late on in day when muscles get tired

we saw physio/incontinence nurse today who was really pleased

so much so has signed him off

every week seems to see more improvements

so there is hope out there

User

Posted 25 Jun 2014 at 18:51

Good news. I'm very pleased for you.

User

Posted 25 Jun 2014 at 21:12

The "good news", the quick recoverers,

these cases give anyone else hope.

Always worth posting.

13 months post "robot" intervention, I still have the odd dribble, late in the day or when running. BUT, I am alive and cancer free.

Always worth remembering that an other potential side effect of surgery, is LIFE!

Dave

User

Posted 25 Jun 2014 at 21:31

I'm not sure what is happening with me. I got to a point where I was on one or two pads a day, a bit worse really late on and getting better but suddenly I'm back to square one, five or six pads a day, squirting all over the place and worried about going out. I always carry two pads with me and feel wet all the time.

Funny, I never thought about an infection but reading about it on this and another thread has made me start to wonder if I have one too. What are the symptoms please? My urine doesn't burn but I do feel a little discomfort after going, a bit like I still need to pass water.

User

Posted 25 Jun 2014 at 22:06

Really happy for you Fozzie!!! ..http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif ... I think people ought to share good news whenever possible. I had my LRP on the 7th May and was virtually pad free after 2 weeks, I'm not sure if it's the surgeon's skill or the patient's positive attitude, perhaps a bit of both,..http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif... anyway great news!.... Sid.

What matters is not the years in your life, but the life in your years!

User

Posted 26 Jun 2014 at 00:30

Originally Posted by: Online Community Member

Funny, I never thought about an infection but readingabout it onthis and another thread has made me start to wonder if I have one too. What are the symptoms please? My urine doesn't burn but I do feel a little discomfort after going, a bit like I still need to pass water.

UTIs do sometimes feel as you describe but to be fair, you didn't exactly give yourself the best chance of a full recovery. At 7 weeks post-op, most men are still taking things gently, particularly around muscle repair but you have already been on two holidays, one of which involved riding thousands of miles on a motorbike. At this stage of the game, your brain is probably still relearning how to control the sphincter (as it did when you were 2 or 3 years old) and that's a big ask whilst also concentrating on riding, watching other road users, looking at ladies and socialising. The backwards step at night could be because you are more tired with the trip and sleeping more heavily. Hopefully, once you start to take things easier again, your bladder control will improve back to where it was before your Germany trip.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 26 Jun 2014 at 00:39

I am definitely improving, but my golf leads to significant leakages. Playing today, 11 weeks post op, I changed my pad twice on the course, but the pad after the 2nd change on the 14th hole lasted 6 hours or more. I am still very happy with my progress.

Stay Calm And Carry On.

User

Posted 26 Jun 2014 at 14:42

Hopefully then there may some improvement before we leave for Denmark in August....

Steve

User

Posted 27 Jun 2014 at 23:29

Steve

I think I had a couple of water infections post op, the urine has been tested in the lab but one was border line infection and the other "nothing was growing ". Urine was very pungent and got a small yellow discharge in the reassurance pad so doc prescribed antibiotics. Continence was still good and not affected by the infection. Slight discomfort in the bladder and in the pelvic area but that could be the wounds healing etc. Flow rate and comfort changed, starts like a fire hose slight discomfort then finishes with a dribble, but no post dribble once put away. Having a camera inspection in three weeks just to check. Was back at work 4 weeks post op one week in the office then back out visiting sites driving 1000 miles a week. I was wearing a pad even after continence was achieved, but 9 weeks post op no pads and no accidents still doing the PFE. I also carry sealable urine bottle and towel in the car just in case the need arises. Speak to one of the support nurses when you get back.

Thanks Chris

User

Posted 28 Jun 2014 at 10:30

Thanks Chris. The symptoms you describe are exactly what I am experiencing. I have an appointment with my GP when we get home and I'll mention it to him. I've never seen a nurse of any sort since my op, except the District Nurse who called in to see me at home just after I was released from the hospital. Even then though it was because my wife telephoned and asked her to come and when she did she said she had no record of me. I did have a post operation consultation with the surgeon a couple of weeks back but that's all so far.

I'm not sure whether to just wait and see if I am contacted or be a little more proactive and find out for myself what is happening. It's been eight weeks now since the op so perhaps I'm expecting too much too soon, I don't know.

Steve

User

Posted 28 Jun 2014 at 12:49

Steve

Must be the post code lottery again, but was your op private or NHS ? My sequence was as follows.

Pre op Incontinence clinic / catheter training. Pads arrived few days later.

Then Op,

Post op district nurse twice in week one,

Incontinence nurse in clinic during week three.

Call from GP to check all was okay week three.

ED consultant followed by appointment with pump technician during week six.

Meeting with consultant/surgeon in week 7.

Already in place nurse led clinic 3 months post op check.

Further appointment with incontinence nurse.

All triggered by initial diagnosis.

Thanks Chris

User

Posted 25 Sep 2014 at 08:56

Hi fizzle forever,

Thanks for posting that - I'm heading towards removal of the post-operative catheter, so I'll put my hand up to being nervous about regaining continence. At one level, my concerns are quite preposterous though as I've done a lot of care work with people (elderly frail, learning disabled, physically disabled, etc) many of whom had significant incontinence issues. But on the other hand, us men do tend to panic a bit at the thought of losing control of some area of functioning that we thought we had "sorted". Realistically, whichever way it turns out to be for me, I'm just going to have to find ways of dealing with it and managing the situation. But, it IS good to know that it isn't always that much of a downer.

Life is a journey. You can't move forward on a journey AND stay in the same place.

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Post Surgery - no incontinence - incontinence

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