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Penile Cancer

Using the toilet after penile cancer surgery

Immediately after surgical treatment for penile cancer, men may have to use a catheter for a few days in order to pass urine. Depending on the extent of the surgery, they may have to make adaptations to how they use the toilet after the catheter is removed.
 
Catheters
Many of the men we interviewed talked about having to use a tube (catheter) from their bladder to urinate for a few days after being treated. There are many different types of catheter each with slight variations or made by different companies. Some of the catheters the men used are no longer available because we have learnt about better ways to use them. Consequently, there is usually little choice about the catheter you use as it largely depends on what is available to the health professionals. Nevertheless, if one catheter doesn’t work there may be others that the man can try. David was initially given a catheter with a tap on it to control his urination; this didn’t work for him so he was given a different type of catheter that drained his urine into a bag. Jim also struggled with his catheter at first.
 

Jim hated every minute of wearing a catheter. He found having the bag strapped to his leg was...

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Age at interview: 60
Sex: Male
Age at diagnosis: 58
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Did you have a catheter at that point?

I did and I hated every minute of it [Chuckles]. It’s... you can either have it hanging loose, which is not very comfortable at all, or have it strapped to your leg, which was much, much better. So I would suggest that if you can have it strapped to your leg and it then it takes a lot of pressure away from the penis. Because after an operation when you’ve got the catheter it’s not a comfortable experience at all. So I didn’t like that [chuckles].
 

The main times that men had to use catheters were when they were in hospital having surgery and for a short period when they returned home after the operation. To have the catheter taken out, the men had to go in to the specialist penile cancer centre.
Some men found having a catheter awkward or uncomfortable. Others talked about using a catheter being embarrassing, particularly if they were using it after they had been discharged home from hospital after the operation. Mick said he didn’t want to go out in public with his catheter, so he had other people do his shopping. Big D had a catheter in for a week and found it difficult to manage, particularly at night. He coped with the assistance of his partner.
 

Big D wore a catheter for a week after surgery; he was frightened that he might pull the bag off...

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Age at interview: 61
Sex: Male
Age at diagnosis: 60
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I came home and I had this catheter and the bag on for a week. The hardest job is emptying it in the night. I was possibly a little bit frightened that you might pull the bag off or whatever while you’re asleep, but I found I cope very well with that. I had a fair bit of assistance from my partner. Then you go back and they take the catheter out after a week – that’s to stop, excuse me, infection more than anything. After that I was alright.

 
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John said there was no discomfort with wearing a catheter and a bag but he felt embarrassed about...

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Age at interview: 75
Sex: Male
Age at diagnosis: 74
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What did you struggle with most in regard to the catheter?

Embarrassment. I couldn’t hide what I what you know… Because they said you know they said to me ‘well of course it….there are so many different types of catheters and you can have a bag which is unobtrusive and so forth and no one will know’. You know but I think... I would know and I knew and even when I was carrying them I mean they were they were... I went down to London with one tied onto my leg. You know, so people in theory didn’t know but didn’t matter- I knew. So… just the embarrassment of sort of having that.

So more that than the physical discomfort?

Oh there wasn’t any physical discomfort. I mean I just got used to sort of emptying the bag. It was just the physical discomfort was there initially because of the soreness of the well not the soreness but the treatment of the penis, you know. But I tell you I had a laugh with the nurses. I mean we had we had fun trying to sort that one out for a long time.
 

At the appointment where the catheter was removed, the men we interviewed had to demonstrate that they were capable of urinating unaided before being allowed home. For some, this meant drinking copious amounts of water and waiting several hours before they felt an urge to urinate.
 

Rodger had a catheter in for a fortnight after the operation. When he had the catheter removed,...

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Age at interview: 65
Sex: Male
Age at diagnosis: 63
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Well I was lucky really. I had... the catheter in... for a fortnight so really from a waterworks point of view I had no problems at all there because it was all automatic. Once I had the catheter out on the first visit to take the dressing off my catheter came out she said that I’d got to sup a pint and half of water and ‘you’re not leaving the hospital until you’ve been to the toilet and I seen that you’ve been to the toilet because I want a sample.’ Alright, you think ‘oo what happens if I don’t want to go?’ she said, ‘You’re still not leaving and if you don’t wee then the catheter will go back in.’ So it gives, it gives you that ‘I’ve got to go to the toilet, no matter how long it takes I’ve got to go because I don’t want the catheter back in. I want to be able to function on my, on my own bat.’ And other than sitting down for quite a period of time... I had no problems again whereas when I was in the hospital there were several people there going in for bladder problems and they couldn’t go to the toilet... so it made me realise that although I’d had the catheter in I could still function as I would normally do although not necessarily to the degree as I did before, possibly not as much as I did before because I probably was going... more regular for short, short amounts where I should imagine that would be because of the operation, just to be sure that you weren’t filling your bladder up and then obviously causing a major problem going to the toilet every time but now I have no problems with it at all.

Difficulties with urination after treatment
Men who have had part of their penis removed to treat their cancer may experience spraying or a difficulty in directing the flow of urine. Some men said these problems were short lived while they got used to the changes or their body adapted. Others had to make permanent adaptations to the way they used the toilet. For some men, using the toilet required practice. A few men talked about having to learn how to use the toilet again, teaching themselves to how to urinate. Others talked about using urination aids or equipment to help gain greater control over their urination. Men that spray can get a small plastic funnel to help them urinate. They can get this on prescription by talking to their specialist centre or their GP. Frosty said his penis was very short at first, so he urinated into a jug to avoid making a mess on the floor. Then his penis appeared to grow longer and he was able to manage without the jug. In some cases, it may be possible to undergo further surgery to improve the flow of urine.
 

Steve found it difficult at first to control the flow of his urine but trained himself how to do...

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Age at interview: 71
Sex: Male
Age at diagnosis: 65
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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 [laughs].

So you had to train yourself in a way?

Yep, yeah.

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 the any spray that does decide to go all over the show it don’t go on my trousers [chuckles]. But I’ve got it under control pretty well now so… it’s…. it takes a little bit of practice. It might not... just think of it when you was a baby and it was going all over the show and now it... it takes a little while to get the hang of it. You’re peeing from a different direction all of a sudden.
 

 
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James finds using a funnel helpful to direct the flow of his urine when using the toilet.

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Age at interview: 67
Sex: Male
Age at diagnosis: 66
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I tend to sit down to go to the loo, nowadays. It… it tends to come out sideways does the water, rather than straight. Which makes it a little bit awkward when you’re stood up hitting the pot [slight chuckle]. There’s no more I can say really, it’s just…..I do have a... a funnel, there’s a little funnel affair... which is very helpful at times for directing it.

Are you managing that OK or...?

Oh yeah, yeah it... that doesn’t bother me at all. It’s a bit of a challenge but it does... it’s alright. We can cope with that.
 

 

Les talks about a procedure to stretch the opening of the urethra at the end of his penis in...

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Age at interview: 55
Sex: Male
Age at diagnosis: 41
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I still have to go back for checkups and it’s like the end of my penis now is, [chuckles] well one of my mates was telling me is it like a welders glove [laughs]. 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 [laughs] 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 the, 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 [laughs] at this present day [laughs].

If a man has had a total penectomy, the urethra (the tube that carries urine from the bladder) will be redirected to a new opening in the ‘perineum’, an area behind the scrotum and in front of the anus. As a temporary measure after surgery, some men had a catheter that went straight into the bladder through the stomach or abdomen. At first, Mark had a slow flow of urine, which turned out to be caused by a kink in the diverted urethra; this was sorted out during further surgery. He was concerned about keeping the area around his new opening clean after urinating, so used cleansing wipes.
 

Michael worried about using the toilet after his penectomy. At first he urinated through an...

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Age at interview: 79
Sex: Male
Age at diagnosis: 77
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I was, I was just glad to get rid of it and I think that was the, strong part of it, I just wanted to get rid of it so that didn’t really affect me whatsoever. Worrying about going to the toilet probably was one of the things I was, uptight about but that worked out alright anyhow so…

I can go – well they gave me – they started off one in the middle of the stomach, which is a bit messy at the time and then when I had the next operation they put it right underneath so I’ve got a little hole right underneath, in my groin which is perfectly alright, yeh. It’s good.
 

 

Simon was grateful he had been given a new opening for his urethra in his groin rather than...

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Age at interview: 65
Sex: Male
Age at diagnosis: 63
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I was told at first that I’d urinate from a different place altogether but the surgeon there managed to just do it so that I [hesitation] it comes out where, where it did before, which has been a lot easier for me. Because I couldn’t in my job I couldn’t sit down, to urinate because there’s no toilet facilities where I work. You know I‘d have to I’d have to walk half a mile and back, you know like. I take water tablets so I pass water about ten times in a morning. So [chuckles] by the time I did all that I might as well not bother.

Well like I say, it’s difficult, it’s not easy passing water where I am, you know. It’s alright if there’s proper toilets and you can take your trousers off that’s no problem but it’s just that if you can’t really go in urinals or like you would before and if you’re out and about and you’re bursting... it’s difficult because you’ve got to more or less to get undressed.
 

Whilst some men told us that they could urinate standing up after surgery, several men felt that it was easier to do this sitting down regardless of which type of surgery they had had; others said that they had to sit down to avoid making a mess. This meant that when away from home they, would have to use a cubicle rather than the urinals.
 

It has only been 3-4 weeks since his last operation so Colin has to sit down to use the toilet,...

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Age at interview: 62
Sex: Male
Age at diagnosis: 62
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But at the moment I mean it’s been 3,4 weeks since I had the last operation so obviously I go to the toilet and I have to sit down..on the toilet. Which is not a big concern because I mean well I think I’m fortunate or lucky enough that at least my movements to urinate is great. There’s no problems there. You know, there’s no problems at all. I don’t need to go every 5 minutes. So I’m okay as regarding that. At the moment. So…yeah… great, I’ve got no..I’ve got no qualms about it, no problems with it at all. No. All I want to do it live and get on with my life.

 

Jordan says he has a better quality of life after treatment as he no longer has discomfort when...

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Age at interview: 58
Sex: Male
Age at diagnosis: 57
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No I would say... it’s a better quality of life because I haven’t got the discomfort when I was urinating now which it was getting towards. Because it the hole was starting to close up because it was right round there. But now although… as I explained it’s, it is, more awkward going to the toilet. I can’t I don’t stand there with other blokes. I can do on a stall… where but not on a on a urinal because there’s a fair chance I’d miss it. And a toilet bowl is difficult to get it exactly right so I sit down and that just makes it a lot easier.

Does that affect your social life in any way?

No, no. It’s just I suppose nobody sees me. You go into a cubicle and they think you’re doing a number two so that’s alright. Sometimes you have to wait as opposed to stand by a urinal but my lifestyle is such that it doesn’t impact on that at all.
 

 

Ian says you’ve got to be aware of where you are, because you need a cubicle to go into to urinate.

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Age at interview: 68
Sex: Male
Age at diagnosis: 66
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That’s the only difference which you’ve got to adapt to one way or another, you know. And there’s no I suppose you’ve got to be aware of where you are really and how you do things. Going to the toilet you’ve got to think because you just can’t go in and stand there, you’ve got to hope there’s a cubicle to go in, you know and then you’re ok. But other than that, nothing’s different [chuckles].

A number of the men we talked to told us that they had lost some control over their bladder after surgery. This meant that they would suddenly need to use the toilet, and always needed to be aware of where the nearest suitable facilities were when away from home. One man talked about having to get up several times during the night to urinate.  
 

After having his catheter removed, Frosty had problems emptying his bladder and with leaking: he...

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Age at interview: 68
Sex: Male
Age at diagnosis: 65
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I’d had a few problems because they’d taken the catheter out when they came back – this was about two weeks after I’d come back, sorry, I came back and saw then the next day. They took my catheter – I was having trouble... at night and I was having to wear pads because my bladder wasn’t strong enough, it was, I was weeing and then leaking two or three times the first couple of nights so I decided to go, we went and got some pads and suchlike from the chemist and I was wearing them at night and I felt a bit… down then and that was the worst of the whole thing funnily enough and probably a man thing, you don’t want to wet the bed if you know what I mean but... Then I know exact date, it was the 13th of September I was back in to see them and they did some tests and they found that my bladder was still three quarters full after I’d just passed water and they said, “Oh, there’s something wrong here der…der…der…” Anyway the surgeon was called and he came in, saw me and he said, “Right, you’re being kept in and I’m going to have a look at that in a couple of days.” So I wasn’t very happy about that purely because it was my birthday and I was meant to be taking the whole family out for dinner that night. It probably saved me money but that wasn’t the main thing on my mind at the time. Anyway, I went in and I had the op about two days later, they didn’t do it the next day, I think they was going to do it but there was an emergency or something and they said, “Terribly sorry you’re going to be, it won’t be today it’ll be tomorrow.” So that… anyway I then had that op and the...I was a bit woozy coming round. It was on the Friday the op, on the Saturday my wife and my daughter came up to see me, I remember them coming but don’t remember much about it. And Sunday morning the surgeon came round to see me and he said, “Well” he said “all good news, everything’s sorted out, I’ve sorted your water works out” and he said “from now on you’ll be peeing like a twenty three year old” and I can honestly say I am but we won’t go into that! [chuckles] I’m, he’s really you know, sorted it all out.

 

When interviewee 21 has an urge to urinate he cannot delay it, he has to go quickly.

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Age at interview: 74
Sex: Male
Age at diagnosis: 73
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Now there’s one thing happened because when I go to pass urine then sometimes I cannot control it. That’s all. Suppose I got to go to toilet when I feel I go to pass urine then I go straight away. I can’t say “oh I can wait five or” no I can’t wait it.

Some men who don’t need to sit down to urinate may choose to use a toilet cubicle for privacy. In order to find public toilets that were private and secure, some of the men used disabled toilets. Many of these toilets can be accessed by obtaining what is called a ‘Radar toilet key’. Radar is a national scheme that gives disabled users access to thousands of locked public toilets across the country.
 

Paul can wee standing up but prefers to use a toilet cubicle than a urinal when in public as he...

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Age at interview: 61
Sex: Male
Age at diagnosis: 59
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Oh yes, yeh. I can give you the perfect example, when I was at my nephew’s wedding and I went to the toilet and some of the chaps came in I had to try and find a cubicle because I didn’t want to, you know where normal men can just go to a urinal and wee, I can’t I have to, because it’s a struggle to try and find what’s left, I couldn’t just stand at a urinal you know so I would sooner hide myself away into a cubicle. So…

I can still like stand there now and urinate, but I did tell the consultant that there are times there that instead of just a normal flow sometimes it’s spraying and that was why he wanted to check my bladder. But I also had to have four tubes up inside me, this is before the camera, to, he said in the hope to stretch it, to help when you go to urinate that it you know. It, it hasn’t really, it hasn’t made much difference but at least I can still kind of stand there like any normal man and urinate, it’s just that if I’m out in public places like I gave you an example of the wedding I went to. Because, you would feel like when you’re struggling to try and find yourself, to urinate, you know you think all the guys are looking at you and thinking oh is, you know, ‘what’s the matter with him’ kind of thing. That was why I hid myself away in a cubicle. Just out of sheer embarrassment.
 

 

John Z has a radar key so he has access to lockable public toilets. He needs to urinate often so plans journeys around toilet stops.

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Age at interview: 68
Sex: Male
Age at diagnosis: 64
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If we’re going out in a group I might need the toilets and I have to go into the cubicle rather than a urinal. As I said I have a Radar key which is handy because you go to the toilets, say you’re on the coast some of them are vandalised and you can’t lock the doors and you’re…so it’s a bit embarrassing so with the Radar key, you’re in the toilet, you’re in by yourself and you can do what what’s necessary and out again. Yeah.

To go…any distance I need to make regular stops I’m not so confident in driving any distance because you can’t just stop and go behind a hedge. Not nicely [chuckles]. I haven’t tried it but [chuckles] I would think it’s very awkward so yeah I don’t, even to go to 30 miles say to [town] I usually stop at [other town] and use the toilets there. So it’s about half way and I need to relieve myself. Yeah [chuckles], yeah.
 



Last reviewed July 2017.
 
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