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Penile Cancer

Manhood, mental well-being and self-confidence

As people come to terms with their diagnosis, think about what it might mean for their family, or adjust to the changes in their life following treatment for penile cancer, they are likely to experience a mix of feelings and emotions (see ‘Feelings and emotions’). Losing part, or all, of the penis through surgery left some of the men we interviewed feeling like they were ‘less of a man’. Others, while recognising that losing this part of their body has been difficult, say that there is much more to being a man than their penis. Some of the men we interviewed, that had a wife or partner, said that their support (see ‘Support of others’) helped to make them feel more secure about their identity as a ‘man’.
 

Now that he felt that most of his manhood has been taken away, Paul said he wouldn’t have the...

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Age at interview: 61
Sex: Male
Age at diagnosis: 59
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Well it’s you know … ok I’m what now? I’m sixty one, I’ve still got feelings. Before the surgery I thought like kind of after the surgery if they’d got all the cancer and things work out I thought ‘well, I should really start going out more and perhaps find myself a lady friend’.

But now because of the surgery what I’ve had I could never bring myself to say you know asking a lady out simply because I feel like most of my manhood’s been taken away like. You know some people think that when you start to get on in years you, we’re all human beings and we’ve all got feelings and, so, I wouldn’t have the confidence now to ask a lady out.

How about the effect that the operation and the illness – has it had any impact on your self-esteem and confidence?

Very much so, yes. I mean you probably haven’t picked up on it but just coming here today to talk to you really, really nervous apprehensive. But I mean like I was in August 14th I was at a wedding, one of my nephews you know, got married and after the wedding was over like in the meal I just sat away on my own, I didn’t feel as though I could mingle with people. It was only then like that my closest friends come over to sit with me like you know. So, yeh my confidence and yeh, that’s gone. Well how can I put it in a way having said that I think that most of my life I’ve always been a kind of an introvert, not an extrovert but this has made it even more difficult.
 

 
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Mark feels 'emasculated'' he struggles to wear jeans or shorts because he is worried that people...

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Age at interview: 48
Sex: Male
Age at diagnosis: 46
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I don’t feel a proper man. I feel… completely emasculated and it’s difficult to explain but I still have, a problem wearing jeans. I still have a problem wearing shorts. Because I think that people know. And it’s silly I know, but I think that people will look and realise that I haven’t got a penis. That’s what I, I that’s what I think. And I’m probably wide off the mark but that’s my overriding feeling. Even now all this time afterwards, is that I don’t feel like a proper guy. I can’t do the things that proper men do. I can’t go and stand up and wee. I can’t… I can’t go swimming. Silly little things like that. And particularly, getting in the shower and sitting down for a wee. They bring it, they bring it home as well. I tend not to look... I never, I don’t look, I don’t have a look. I do whatever I need to do, and then I just go. I don’t, I don’t look because it’s not something I want to look at. Hopefully very soon I shall be going and getting some reconstruction done. That’s going to be sooner rather than later. I understand it’s 3 or 4, maybe 5, operations but I’m prepared to go through with it, if that would mean a little bit of closure for me. But ‘emasculated’ would, would sum it up quite well.

 

Whilst Tim feels that his sense of masculinity has been affected, his wife is quite happy and he...

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Age at interview: 54
Sex: Male
Age at diagnosis: 53
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How about your sense of masculinity?

Well, yes I suppose that’s affected, that’s affected a little. If you look at it, look at it logically and objectively, I’ve got a wife who’s quite happy. As I say, our sex life is back to something approaching normal or something slightly different and certainly no worse than it was before. Perhaps after nearly thirty years of marriage then perhaps things had got a bit, bit routine, a bit regular, and this has, you know, forced us to spice things up. So that’s, so that’s helped, yeah, so that’s a positive reaction on that line. Yes that’s the bit that, all the bit that thinks, you’re still –you may be in your fifties and married thirty years, and you still want to go out and think, think ‘Oh that pretty girl down the road, if yeh, she’s really just dying to, for me to ask her.’ And then you think, ‘No that can’t happen now,’ or, ‘it probably won’t happen.’ It would be very different, and perhaps you haven’t got something to offer other people. And so that does change your view of life a little bit. So yes, so it has had some effect. But practically and even realistically, then the effect isn’t as big as I thought it would have been.
 

 

The support of Jordan’s wife has been vital in helping him overcome his initial feeling that he...

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Age at interview: 58
Sex: Male
Age at diagnosis: 57
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How about your mental health?

[Laughs] Crazy as ever. I okay. I feel good in myself. I feel good about myself now and possibly trying to reinvent myself. Because, a few months ago for, I mean not a day went by that I didn’t think about it. Obviously every time I was going to the toilet I’d be touching it and seeing it and it was a worry and I was wondering what the end result was going to be. But now it’s not such a worry. It’s possible that it might recur, that I might get a… you know, a bad result from the surgery or anything like that. I don’t know. But at the moment I feel at least I’ve done my best with what... information and facilities were available.

Has there been any effect on your confidence or self-esteem?

Before the surgery yes but since then no. I think it’s all been good, very positive. And... what’s particularly nice is that... you know a lot of people have bothered about me and sent me cards and boxes of chocolates and things like that so that’s just great and nice bottles of wine. So that’s the upside, you know that people care about you rather than you’re just a part of the furniture. Which I’m sure they don’t really think but it’s it can seem that way. So yeah my self-esteem is fine and it’s nice in a way that I’ve been able to have a little bit of a back seat for a month and people don’t expect too much of me.

Has there been any impact on your sense of masculinity?

Initially yes, but not at the moment, no. I think my wife did say to me, well I don’t think I know my wife did say to me, that even if I had to have my penis amputated, it wouldn’t make any difference to her as she loved me or saw me as a man. So that was very encouraging. So I’d say [laugh] the positive support of your spouse is vital.
 

 
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David thinks that his experience has had a marginal effect on his sense of masculinity but says...

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Age at interview: 70
Sex: Male
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No I mean I think sex life changes as you get older anyway and it’s probably had a marginal effect but… it’s very slight and… masculinity no. It’s not had any … any effect on me. I mean I think if you, I expect it depends where you start thinking about masculinity in the first place, doesn’t it? But I mean I think... I think there’s far more to being a human being and far more to being a man than just simply being dependent on a penis. But not to say it’s not, you know, a very important part of the body obviously. But I don’t think it’s had the... in terms of how I see myself as a man, as a person it’s had no impact at all.

At times, the mental and emotional impact of having cancer can feel as great as, or even greater, than the physical effects. Some of the people we interviewed found that there were times when they felt depressed, or their mood swung between highs and lows. Long after the physical wounds of surgery had healed, some men found that the psychological impact of their cancer continued because they continued to be troubled by thoughts about how their lives had changed.
 

Mark says the psychological part of having penile cancer was the overriding problem for him.

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Age at interview: 48
Sex: Male
Age at diagnosis: 46
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I’m a single man anyway. I’m a single man anyway. So… not being able to have sex is... doesn’t register. That’s just not important at all. I have two children from me marriage that that failed and they’re grown up now. So you could say that that part of my life wasn’t important anyway. But and I’m smiling when I say this... you know it’s very difficult to have sex without one. You know it’s not something you can do. But at that point that’s not a consideration. I need to get myself right and get myself fit and well. They… the problems with me have been more…psychological rather than physical. It’s… maybe that, maybe I’m wrong maybe... I mean it’s 50'50. It’s 50'50 the psychological side of it and... the physical side of it. Physically I heal very quickly. I healed very quickly.  But the psychological part of it became the overriding problem for me.

They didn’t explain … obviously it’s going to impact on your life. It’s going to make... it’s going make a huge impact on your life because it’s going to colour just about every single facet of your life. You know you...I no longer can... The list is endless, the list is endless. It affects all sorts of things in your life. So I knew that when them things arrived I’m going to have address them, I’m going to have to deal with them, individually. And you very soon get used to sitting down to wee.  You very soon get used to... to nothing being there. You just... you do. We’re remarkably malleable as human beings, we are. And we’re resilient.
 

 

John Z occasionally gets depressed, but it is not common knowledge.

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Age at interview: 68
Sex: Male
Age at diagnosis: 64
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What do you think has been the major effects of the illness or from the treatment on your daily life?

Obviously you get down sometimes you think well why me? Why has it happened to me? And, but... you know I think well there’s people in worse situations than I am. So get on with your life. But I do go into depression occasionally. But most of the time, I think well there’s people a lot worse off than I am. Just get on and make the best of your life.

Have you had any support for that depression?

No I’ve… apart from yourself that’s the first time well the wife obviously knows I get depressed and… I have mood swings sometimes I take it out on her. No it’s the first time.

Should you be offered any emotional support, would you take that up?

It’s not happening on a regular basis. It’s some things just get on your nerves and drives you into a sort of depression. Nine times out of ten you can snap out of it and say to yourself well you know, as I said before, there’s people worse off than you are. But no. I’ve never mentioned it when I’ve been up to the surgery or… whether I when I go for my checks.  No. Apart from myself and my wife. Probably she’s told her daughter that I have mood swings and… yeah. But I don’t make common knowledge, no.
 

After treatment, the men thought about their cancer less and less. Some of the men said that they didn’t think about their cancer often and they felt as if they were as strong emotionally as they were before they found out they had penile cancer. Nevertheless, thoughts about the cancer did sometimes return making them question why they got it and what will happen to them in the future.
 

Mick says it’s something he doesn’t think about: he’s got the disease and that’s it.

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Age at interview: 69
Sex: Male
Age at diagnosis: 67
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Did the disease or the treatment for the disease, did that have any impact on your confidence or self-esteem?

No I don’t think so. No. I know I had it and that’s it. There’s nowt I could do about it. Only have the operation. It’s something you don’t think about like, you know. It’s… you’ve got the disease and that’s it. And you, you’re wondering how you got it. That’s the point. How you caught it? How you got it? And how’s it... how you got it like that. Because like I say I’d never heard of it before. And I’ve never heard anybody who had it before. All the time I was even at... at sea, I’d never heard anybody aboard our ships. When I was you know, even when I was in the merchant navy, even when I was on the standbys. I’d never heard of it. I’d never even seen it, I’ve heard of you know.
 

 

While things sometimes go through interviewee 21’s mind, the cancer hasn’t affected his...

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Age at interview: 74
Sex: Male
Age at diagnosis: 73
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Have there been any effects on your self-esteem or confidence?

No, no, no, it’s ok. Nothing affect me that. But sometimes you’re, things can go through your mind. Things go through your mind. Oh you got a cancer, maybe you don’t know what will happen. Something must happen, what, I don’t think about too much.
 

To help them cope with the emotional impact of their diagnosis and treatment, several of the men we interviewed tried to maintain a positive attitude, often using humour to ease the burden. This often meant laughing with others or learning to accept their help (see ‘The support of others’).
 

Colin thinks humour is a healer: being open and honest is the best policy in life.

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Age at interview: 62
Sex: Male
Age at diagnosis: 62
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You both mentioned the positive attitude  and Colin you said humour. Do you find that’s a good strategy for coping with the illness?

Patsy' Definite, yeah.

Colin' Oh yeah we’ve had a lot of  upsets in life where you know like where we’ve had this or we’ve had stresses in life, problems in life. And I think humour I think is an healer in itself. To be open, honest and humorous- I think that’s the best policy in life. Where… it’s a tonic. You know it’s a tonic in life where you can... and it eases the burden better. And people who you talk to, instead of them crying in front of you and saying ‘oh you know, oh you know, oh, you know’ one thing or another as regarding ‘heard of this and heard of that’. It’s a humorous where they can laugh with you. Even though they’re upset, they have a tendency to be that humour seems to get... bring you all closer together. You know you’re not all individual, you’re not sitting on one end of the room, like a lot of people do with weddings where the one family sits the one side and don’t talk to them, another family sits the other. And nobody...there’s... it makes...makes the whole situation a disaster. And you just enjoy yourself, get on with life.
 

 
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Frosty’s cup was always half full and when on the ward he had a laugh with other patients.

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Age at interview: 68
Sex: Male
Age at diagnosis: 65
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So mentally you feel as though you coped quite well?

I felt I coped very, very well. I mean the surgeon said the surgeon said to me I was one of the best patients he’s ever had on that score, as I said earlier my cup was always half full not half empty and I you know not, you know I don’t mean, I’ve got to be careful what I say here, I don’t mean bragging – far from it but I used to try– we used to have – we had quite a – there was only five of us in the ward, we had quite a laugh and a giggle and suchlike and so forth.
 

 

Tim found that nobody had ever heard of penile cancer. When he talks about it he finds that...

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Age at interview: 54
Sex: Male
Age at diagnosis: 53
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Has there been any impact of the treatment on your confidence or self-esteem?

Surprisingly not. I mean, I thought it might do and I was prepared for it. But I think the way that I’ve approached it by looking at it; by you know facing it; trying to see the humour in it; trying to talk about it, telling people about it rather than hiding away, then I think that would make, make a difference. If I’d been ashamed or afraid to talk about it, I think it would have made me – yeah, I would have found it harder to deal with. But by looking at the people, I’ve now got. You know, I think people see me as, you know, Tim’s had that operation done that none of us would like to have done, and so I’m officially brave, you know. I’ve gone for those points [chuckles].
 

 
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To maintain his self-esteem, John had to learn to let people help him.

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Age at interview: 75
Sex: Male
Age at diagnosis: 74
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Well I find that I’ve got to laugh at myself when I forget things now, yeah. I’ve got to laugh at myself when I stumble, you know because I do that but yeah. But in terms of my self-esteem the main thing is and I again this is important, I’ve had to learn that if someone is concerned about you and asks you, I told you I find it very difficult to talk. Now if someone offers something I don’t. If someone is if someone is wanting to do something and be helpful then I say ‘yes alright’. Even if I can do it myself sometimes occasionally I’ll let them do it. I mean on holiday people were picking my case up you know. I could have done it but no someone else did it for me. You know ‘no you’re not going to do that John’. You know well I mean I can pick up a chair and move a chair around. I mean I’ve done some furniture moving and stuff like… But that wasn’t the point. They wanted to do it so I said, ‘Oh thank you very much’. I didn’t... you know. So from that point of view accepting help from others is very, very important when they offer. Even if you don’t... even if I don’t need it, you know.

A number of men talked about the importance of having a strong support network in helping them to cope with the mental and emotional impact of their experience, be it from friends, family or a strong faith (see ‘The support of others’). Several said that sharing their concerns and being open about it had helped them to maintain their self-confidence and their self-esteem.
 

Steve wasn’t looking forward to the rest of his life on his own: he would have been devastated if...

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Age at interview: 71
Sex: Male
Age at diagnosis: 65
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I was not looking forward to living the rest of my life on my own totally…I’d been married, a very successful, happy marriage, for 43 years.  I was a widow for 3 and a half years when me and [Name] got together as friends. And when we realised, or I realised, it was... was going to go on further than that I had to explain it all to [friend]. And I think if she’d have knocked me back then, that might have been a little bit difficult. But she didn’t and it made life easier. See she was quite happy realising that we was good together.

 

Sharing the problem with family and friends, there has been no impact on Jim’s confidence or self...

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Age at interview: 60
Sex: Male
Age at diagnosis: 58
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Has there been any impact on your confidence or self-esteem?

Not at all because really I’ve sort of shared this problem with family and friends. It’s not a taboo subject. It’s been kept in the open which I think... you know… if I’d lost a foot that would obvious. This isn’t obvious because it’s covered by clothes and I think it should not be taboo at all. I think it should be brought out in the open. I felt better for it I’m sure. And so as a result people have reacted accordingly. And I felt that… you know… it’s been... it’s been acceptable. You know I haven’t been sort of shunned [smiles] by any part of the population or anything like that. It’s been accepted. And therefore I feel fine with it.
 

 
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John smiles because he feels he's got a lot for which he feels he should be grateful. For a short...

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Age at interview: 75
Sex: Male
Age at diagnosis: 74
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And... you know people say ‘well you’re smiling John’ you know and I smile and I always smile. I said, ‘But I’ve got a lot to be grateful for’ I said ‘I’m here’.  I’m able to do things. The things that might have happened haven’t happened. There might be other things happen but at they’ll if they come they’ll come. I not going to sit and think well it might that. But it’s when I wake up in the mornings, this is important in the conversation, when I wake up in the morning for about quarter or an hour, twenty minutes I’m scared, you know. And I mean that seriously. I’m scared, you know and… and then…I pray. That’s where the faith comes in. I pray and I get up and I think right I’m here, let’s get on with the day. You know and there’s nothing to be scared about because I’m not I’m… you know if something happens God’s been with me so far. He’s going to be with the rest of the way.

Counselling and psychological services were rarely considered or offered as ways of supporting these men to manage with the emotional impact of their diagnosis and treatment. Of the men we interviewed, some said that they wouldn’t have used such services even if there were offered, although Mark found that counselling helped.
 

Mick says he would not have accepted an offer of counselling: he was relieved that his cancer...

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Age at interview: 69
Sex: Male
Age at diagnosis: 67
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Would you have taken up an offer of maybe counselling or…?

No. Because I knew, I what I was I had, and I know what I’m going to, what’s going to happen to me. I just let it go. I mean I just carried on my normal routine. I thought if I do that, I’m not worrying about it. Although I was a little bit worried that it spread. That’s all I was worried about, it spreading. I know I had it, I know I’m going to get treated for it. But all I was worried it spreading. But when they told me, I was relieved, real relieved, that it hadn’t spread. That was... that was the biggest relief. And like I said and then after that I just carried on my normal routine, what I do. It never worried me. Because I know they’re the specialists, they’re the people what seeing to me, they know what they was doing, they know. So I left it to them. I do what they tell me. Because they, they’re the... they’re the specialists in... And that’s it.
 

 

Mark wouldn’t be in the position he is now without the help of a local counsellor, although the...

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Age at interview: 48
Sex: Male
Age at diagnosis: 46
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You mentioned there about needing emotional and mental support. Were you offered any by the hospital?

They made me an appointment… to… Actually sorry no, I’m mistaken. My GP, at my local surgery made me an appointment to see a lady, a counsellor.  I’d been to see my GP to get the latest of my sick notes. And I was... I were fragile. Emotionally, I was terribly fragile. And he thought that it would do me some good. And I’m one of these people that I’m prepared to do anything if it helps me so… I went to see this lady and it didn’t… all I did was talk. She didn’t ask me any questions.  I was there 45 minutes, cut off quite abruptly when the 45 minutes was up. Nothing felt right about it at all. Nothing at all. I… didn’t make another appointment to see her. I then went back to see another GP because I had… I was in some discomfort. And I’d said that I’m seen this lady at the... the local health centre, this counsellor. And he said, ‘No I know somebody much better than that Mark’. So he made me an appointment to see this lady in [Name of place].  And I’ve been now… this lady is as good as the other one wasn’t. She’s just been magnificent. And I’ve been to see her maybe on 13, maybe 12 or 13, occasions now. And she’s had to do a lot of work out of hours because she’s never come across anybody with my problem. And she obviously doesn’t know, because she hasn’t come across anybody like me, she doesn’t know the progress that I will make or the timescale within that progress. She doesn’t know what feelings I should get back. She doesn’t, she didn’t know anything the disease or anything about the problem at all. Now her having done a lot of work behind the scenes and me opening up to her has made me feel oh markedly better. It didn’t happen overnight. It didn’t happen straight away. I had the first time I went to her, I had a box of Kleenex and I nearly did the box of Kleenex out. But the next time I wasn’t as bad and I wasn’t as bad. She gave me some homework to do really, it was just like being at school, she gave me… she needed… do a mind… strengthening if you will. There were, there were situations that… situations, that I would ordinarily have been able to get through and get round and get over, were proving to be difficult for me. And she gave me a way to try and sort that out and I worked at that. And I used to take great pleasure in going racing or going walking or going golfing. And I’ve done none of them. I’ve done none of them since. And… I think it’s… I’m physically well enough now but she gave me some little tasks to do again just to try and make me feel good about me. Not to feel... don’t let situations get the better of you- I’m simplifying it somewhat-but don’t let them get the better of you. Try to take every day and improve a little bit every day and she’s been an absolute, absolute diamond. And I absolutely wouldn’t be in the position I am today if I hadn’t have been seeing that lady in [Name of place].
 



Last reviewed July 2017.
 
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