Living with and beyond cancer
Urinary functioning
For people who had been treated for prostate cancer, colorectal cancer, cervical cancer or penile cancer, having surgery or radiotherapy to the pelvic area can cause problems with urinating. For instance, men with prostate cancer may experience urinary incontinence after surgery. In prostate cancer the condition itself can also cause bladder control difficulties. In most people treated for cancer their urinary problems are temporary, but some of the people we spoke with were still affected five years or more afterwards.
The most common urinary problem mentioned by people we spoke with was needing to go to the toilet more often than normal. The need to go frequently varied depending on what activities people had been doing and on what and how much they had been drinking. Some said it only occurred during the night, some only in the morning, and others didn’t specify when it happened. The need to go to the toilet often was sometimes accompanied by a sensation that they had not fully emptied their bladder on each occasion, and so the needed to go again within a relatively short space of time.
Ten years after having radiotherapy for prostate cancer Eric is getting up twice a night to pass urine; his need to go varies depending on how active he has been and what he has drunk.
Ten years after having radiotherapy for prostate cancer Eric is getting up twice a night to pass urine; his need to go varies depending on how active he has been and what he has drunk.
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I still get up in the night, only about twice. Well, I don’t know whether it’s the PSA, whether it’s my prostate or not, because it’s always the same time. I think it’s a habit because about two o’clock in the morning I get up, go the loo, come back, and I get up again at about half past five, six o’clock. And I reckon it’s a habit. I don’t think it’s down to this, you see. It can change that sometimes, if I’ve been very physical in the garden or something like that and I’m really tired when I go to bed, I’ll sleep right through. So I don’t know. I don’t think there’s that much to worry about in that sense.
And when I told the consultant, I said, “I’m still getting up two or three times in the night”, he said, “Well, that’s all right”, you know, “It’s not a problem is it.” I said, “Well, no, it’s just it disturbs your sleep a bit.” So he said, “Well, it’s all right.” He said, “Most people get to your age”, he said, “When they get to your age they’re up in the night anyway” , but he said, “What about the day time?” I said, “Well, I’ve no problem with the day time”.
I notice that it might be me. I don’t know because I notice things can affect me. If I drink tea, if I have a cup of tea, that immediately goes through me. Coffee is not so bad, that takes longer. Beer takes longer and wine takes longer, and I can drink milk all night long and it doesn’t make any difference, but tea, and I drink quite a bit of water. That was something they told me at the hospital, “Drink lots of water”. And I do drink lots of water. And they also said it would be a good idea not to drink much water after dinner at night, you know, which I’ve have to do now, have your drink, whatever it is, and then don’t have anything else, see. And that’s pretty much what I do actually.
Eight years after having radiotherapy for prostate cancer Ken has to pass urine more than once after getting up in the morning because he can't fully empty his bladder the first time.
Eight years after having radiotherapy for prostate cancer Ken has to pass urine more than once after getting up in the morning because he can't fully empty his bladder the first time.
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I still have trouble in the morning, I go to the toilet and it feels like I’ve got to go again, that always happens, that’s in the morning. I don’t know why that is, even when they were testing me afterwards I still found that it’s still, I’ve never emptied my bladder. There’s always something there.
And that’s been continuous has it?
That’s continuous. That’s still doing it, so they haven’t cleared that up.
Other people said they often experienced a sudden urge to pass urine which they couldn’t ignore. This problem could limit their social lives because they needed quick access to a toilet at all times and to know where they could find facilities when out and about.
Five years after having radiotherapy for prostate cancer Ray began to experience urinary urgency, which restricts where and for how long he can go out; he plans journeys via public toilets.
Five years after having radiotherapy for prostate cancer Ray began to experience urinary urgency, which restricts where and for how long he can go out; he plans journeys via public toilets.
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Ray' I have bladder problems and they’ve tried to cure it and they’ve tried all sorts of things.
It hasn’t, it doesn’t seem to work, and they did say to me at one time, they’re sorry but they’re afraid it’s an after effect of the radiotherapy. They said, “If we blow out the cancer with radiotherapy, that has gone but you’ve still got this symptom, which we can’t do anything very much about.” They tried and it doesn’t work.
Okay. So what exactly happens that is affecting you in terms of your bladder?
Ray' I could get up now and go along to the loo. In the middle of a conversation you suddenly want to go to the loo.
Wife' There’s the urgency.
Ray' So, it’s always, and it’s no good saying, “Oh, I’ll go to the loo in a minute.” It’s happening, it happens right, straight away. You’re, as I say, be in the middle of a conversation like this and I’ll just say, “Excuse me”, and I’ll have to dash off to the toilet.
Wife' So it’s a bit prohibiting where you can go. How far you can go. How long you can go outside.
Ray' If you want to go out for the evening it can be very difficult because you’ve got to make sure your bladder is empty before you go, have a seat in the row where you can get out and things like that. And if you go out for a meal, halfway through the meal you may have to get up and go to the toilet.
How do you think it is affecting your life nowadays to continuously have this problem?
Ray' It’s difficult.
Wife' It’s restrictive really.
Ray' It’s very restrictive. I mean we’ve got relatives in [county] and I wouldn’t now do the journey to [county] unless I’ve planned out beforehand where every loo is on the way.
Wife' [laughs]
Ray' Which doesn’t makes a… Some people plan their trips via the pretty way, some people the fastest way, and I go by loads of loos.
Were you able to get access to disabled toilets if you wanted to?
Wife' It all depends where you are.
Ray' Yes, it is, I mean.
Wife' In different counties that is run differently.
We went to Ray's sister’s golden wedding do, our son drove our car for us and half way there, there was a disabled toilet but it was 20p in the slot, so if you hadn’t got your 20p it was difficult. And by the time we’d opened it, he’d had problems before.
So it really depends on.
Wife' Well, there the toilets that were there previously I noticed was a woman coming out but she had a key, because they were issued locally, but for visitors it was all this paying slot. People outside the county or wherever.
Ray' So it does affect your life in so much as on simple things like that, which normally you wouldn’t think about.
They begin to take precedence over other things.
Other, more unusual bladder problems also occurred. For instance, after having part of her gut removed because of colorectal cancer, Jennie has been left with a lot of problems including a prolapsed bladder, which she empties via a catheter inserted through her abdomen. She said, “I’d rather not have it but, you know, I do live a normal and active life, so it’s not too bad”.
Men treated for penile cancer may also be left with long-term changes in the way they use the toilet. Penile cancer is rare but when it occurs the most common treatment is surgery. The extent of surgery depends on the size and location of the tumour; reconstruction surgery is sometimes possible. Most men need to have only part of their penis taken away but in a few cases the whole penis is removed (total penectomy) and the tube that carries urine from the bladder (urethra) is rerouted via a new opening behind the scrotum and in front of the anus.
Men who have had penile surgery may have difficulty controlling the stream of urine, causing them to spray outside the toilet or urinal. Some men we spoke to said they could no longer use a urinal and had to sit on a toilet to urinate. Barry said he had to sit down because he urinates from a different place since his total penectomy.
Frank needs to pee sitting down since his partial penectomy but said that sit-down toilet facilities weren't always available, so he just had to manage.
Frank needs to pee sitting down since his partial penectomy but said that sit-down toilet facilities weren't always available, so he just had to manage.
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What were the main effects of the treatment? How did it affect you on an everyday basis, on a daily basis?
In the recovery period?
Yes.
After the operation?
Yes.
Well because I have a partial penectomy I can’t use urinals in public toilets, so if ever I need to go for a wee I have to sit down and do it. I’ve got used to doing that. The only difficulty of course is if I find myself in a place where there aren’t any sit down type facilities, but I manage, you have to manage your life when something like this happens.
Some men were offered help to overcome problems associated with spraying when urinating. Others said they had successfully retrained themselves to accurately control the flow of urine.
After surgery for penile cancer Les found the end of his penis was closing up, causing spraying; he had surgery to widen the opening and uses a dilator regularly so is now able to urinate effectively.
After surgery for penile cancer Les found the end of his penis was closing up, causing spraying; he had surgery to widen the opening and uses a dilator regularly so is now able to urinate effectively.
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I still have to go back for check-ups, and it’s like the end of my penis now is, well one of my mates was telling me is it like a welders glove. It’s sort of quite hard and I have to moisturise it, and the end of the penis is closing up. And I was in hospital, it was just after Christmas, so that would be January 2011, where they did the, what they call the, is it ‘meatus dilation’? And they put this contraption in and blow the end open a bit and, now that is really really sore and I must admit I actually spoke to the nurse at the hospital last time, if I’d have known it was going to be that bad at that time I wouldn’t have had it done. But the results of it have been pretty good, because the reason I went was this hole was closing up, and every time I went to the toilet it was just spraying everywhere, it was just like a fire sprinkler and I had to sit down to go the toilet all the time. And after going through this procedure, you know, I’ve now got a proper stream when I go to the loo. And I have to sort of moisturise it still, and they’ve told me to put a catheter in twice a week just to keep the opening open, and that’s where we’re up to at this present day.
After having cancer removed from his penis Steve had a reconstruction; he was told he would have to sit down to pee because of spraying but instead retrained himself to urinate accurately.
After having cancer removed from his penis Steve had a reconstruction; he was told he would have to sit down to pee because of spraying but instead retrained himself to urinate accurately.
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So were you given information about how the surgery would impact on you using the toilet?
Yes we went through that... They said to… you’ll have to sit down for the rest of your life. But I found that more messy than standing up. You just have to learn how to go to the toilet again. You have to learn the... You’re going to have… You spray more than... Pee in a direct line any more. So you just find ways round it. It is quite difficult but after a few months I’m quite happy now. I’m quite accurate too.
So you had to train yourself in a way?
Yep, yeah.
Did the staff at the hospital give you any assistance with that?
No they just said, “You’re going to have to learn, mate”. They were good. They just said, “You’re going to have to go away and learn, your catheters out, sit down. You’re going to make a mess, so just tidy up behind yourself each time”.
So as I say, going to the toilet I’ve learnt how to do, I’ve learnt that I, it sounds bragging now, but I held it with two hands and I hold my hands so I can stop any spray that does decide to go all over the show, it don’t go on my trousers. But I’ve got it under control pretty well now so… It takes a little bit of practice. It might not… Just think of it when you were a baby and it was going all over the show, and now it takes a little while to get the hang of it. You’re peeing from a different direction all of a sudden.
One woman was left with urinary incontinence for a short while after radiotherapy for cervical cancer but successfully used pelvic floor exercises to strengthen the muscles that controlled her bladder. Another woman said that nerve damage from a hysterectomy meant she no longer had the normal sensations that indicate a need to urinate; she retrained herself using reminders.
Nerve damage from a hysterectomy for cervical cancer left her unable to feel when she needs to urinate, so she reminds herself to go when her stomach feels full.
Nerve damage from a hysterectomy for cervical cancer left her unable to feel when she needs to urinate, so she reminds herself to go when her stomach feels full.
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So it was only that, it was the numbness and just having to remember, I had to remind myself to go to the toilet, which is very bizarre, very bizarre thing. But again, you know, I sort of go round it, my daughter was being toilet trained when I got home, and so I just used to, when she went I used to go too.
So you didn't have the feeling that you needed to go?
No, and I still don't fully. I've replaced it with other things, I've realised I've replaced it with other feelings. When I know my stomach feels full, that's when I go, so I've sort of replaced it with a different way round. And I think it's unlikely that people have that, I think they said it doesn’t normally happen that it never comes back, I think it's normally just temporary but for some reason it can't have reconnected somewhere down there. I think it's where they cut the urethra, it’s just whether that re-forms, the nerves for some reason didn't sort of, don't sort of reconnect for me.
Last reviewed October 2018.
Last updated August 2015.
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