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Penile Cancer

Sharing experiences

Many people who have experienced illness find sharing their feelings about their experiences to be helpful. Talking to people, in similar positions to oneself, can be a positive way of coping and may provide benefit to both parties. Many of the men we spoke to said they would have liked to hear about the experiences of other men with penile cancer to help them cope with their illness and its treatment. Others said they wouldn’t seek out other patients but would be happy to talk to any they met. Some were wary of speaking to other men about sexual difficulties arising from their treatment, and others had no desire to share their experiences at all.
 

Colin would like to be able to compare other men’s feelings and experiences with his own.

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Age at interview: 62
Sex: Male
Age at diagnosis: 62
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Is there anything that you’re like to know about other men’s experiences of penile cancer?
 
Patsy' Yes.
 
Colin' Yeah really yeah. Because it is a… It is a knowledge that to see how they react or they feel about it, you know. Or if they’ve had the op… Same operation as me. If it’s been severe or if they have been even more severe where they’ve had everything took away. You know what I mean? Testicles and everything. You know.
 
Patsy' Have they? Oh you can’t answer that. But there again it would lovely to know. If I was to go onto your internet and find that out that would be great. Absolutely wonderful.
 
Do you think you would have found that resource helpful when you were diagnosed?
 
Patsy' Definite. Wouldn’t we?
 
Colin' Yeah or the proportion of length of life to live. You know that that’s basically the thing really, you know.
 
Patsy' If they got on with the procedure what after effects did they have and... It would have been marvellous.

 

Some men we spoke to had known other men with penile cancer or had met other patients while in hospital. In some cases, the men gave their clinical team permission to pass on their contact details to men who would want to speak to another person with penile cancer.
As penile cancer is a rare condition, men will not always have the opportunity to speak to other penile cancer patients at the hospital where they are being treated. It may be helpful to talk to men who have undergone treatment for other cancers or have had similar treatments. On the Internet there are a variety of support groups for cancer, which can provide a way of speaking to others about penile cancer (see ‘Resources’).
 
If it is not possible to speak to other patients, sharing thoughts, fears and anxieties with friends, family or those in a helping role can provide a great deal of relief from the stresses which penile cancer patients may experience. Several of the men we spoke to talked about the importance of sharing emotions.
 

Frank talks about the importance of accepting the positive diagnosis and sharing doubts and fears.

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Age at interview: 77
Sex: Male
Age at diagnosis: 72
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I think all I would say to somebody who has already been diagnosed with penile cancer... accept the fact that it is a positive diagnosis, take a positive outlook on life, you can’t turn the clock back, you have it, you’ve been diagnosed with it, take it on board, be positive, share your doubts and fears if you feel you are able to with other people especially with your wife or your partner and your friends as I have mentioned previously. But each of us reacts differently when we are faced with a severe problem... and it would be quite wrong for me to... tell somebody... how they should react themselves, but I think that’s all I can say really.

 

Jim says that there is nothing to be ashamed of, so don’t keep it to yourself.

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Age at interview: 60
Sex: Male
Age at diagnosis: 58
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I would say don’t keep it to yourself. Speak openly to people that are close to you initially. It’s a part of your body that’s got to be seen to… and dealt with like any other part of the body. Nothing to be ashamed about. And just make sure that the doctors get on with it and advise you as clearly as possible as to what the state is at present with you. So… don’t keep it to yourself effectively.

Sharing experiences can equip men with valuable information, we asked the men we spoke to if they had any advice for other men who have recently been diagnosed with penile cancer or suspect that they may have penile cancer. One of the key messages which the men wanted to pass on to others was the importance of swift help seeking. Steve emphasised the importance of being assertive as a patient, and not taking no for an answer if you know something is wrong. Reflecting on their own experience, many men felt that if they had sought help earlier then they may not have needed treatments as radical as some received. Some men also felt that their initial fears and anxieties were proven to be unfounded once they had received help.
 

Steve tells other men to make sure you get to see the right person if you have something wrong.

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Age at interview: 71
Sex: Male
Age at diagnosis: 65
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Do you have a message for anybody that has been recently diagnosed with penile cancer?

Not so much for them who have been diagnosed because they’ve already got through it, for them who are suffering from any sort of problem like that, go out there and don’t take no from anybody. If you know what you... you’re right, you’ve done nothing wrong, you’ve got a problem, make sure you get to the right person. And don’t let anybody fob you off about second class or you can wait and it doesn’t... just get out there and make sure you get to see the right person.
 

 

Tom recommends seeking medical advice quickly for any problems as earlier detection usually leads...

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Age at interview: 71
Sex: Male
Age at diagnosis: 69
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It’s really the message to get to people who are wondering what they’ve got and if there is anything that’s being questioned that they should seek medical advice on a fairly immediate basis. That obviously, like all cancers the earlier it’s actually treated ah, the more success rate there’s going to be. Therefore don’t hesitate if you think you’ve got something.

Some men talked about the importance of accepting the diagnosis, once penile cancer has been confirmed. These men believed that by achieving this acceptance men would be able to move forward and work towards getting better.
 
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David believes that at first you must accept the diagnosis and then you can move forward.

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Age at interview: 70
Sex: Male
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I think it’s very difficult. I think... probably the main thing is to... I think it’s with lots of things in life I think the first thing is you’ve got to accept it and talk about it and accept it. And use it as a use it as a way of trying to focus on what’s important to you and what’s important… you know and a way of moving forward. And I for one reason or another on the whole I found that relatively easy to do. But it’s very difficult… you know, other people’s experiences are different and histories are different and…

I think the key, in my experience at least, is having to accept the thing and then work from it and then and then doing what you can from it and accepting and having the... you know, finding out what’s fortunate in your life and working with that. And… you know but… you know, I’ve been in a relatively good position on those things as well so that’s what I would say anyway.
 

Many of the men talked about the importance of using humour and adopting a positive attitude. Being positive and finding moments of humour in their experience was seen as an effective way of getting through the illness and enjoying life after treatment had finished.
 

Barry talks about still enjoying life after surgery.

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Age at interview: 66
Sex: Male
Age at diagnosis: 51
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I think now, if they got it early enough you won’t have the problems like what I’ve had. But, to give them advice and that is don’t ever, ever get disheartened. Always look on the bright side because there’s always got to be something better just round the corner. And this disease, I mean it’s not, chose wherever it is wherever it is, it’s not a... laughing disease is it? People’s not happy because they’ve been told they’ve got cancers and that but the thing I want to say to them really is always look on the bright side, never ever get despondent and with it being where it is as a man in some senses... different people react in different ways… I mean I’ve lost mine but people now seem to be, it seems to coming to light now more and more than when I first contracted it.

Of course it’s a hard, to me course it’s a hard decision but at the end of the day, if life’s life isn’t it? And you need to live your life. I haven’t got a penis but I’m 66 years old now, I haven’t got a, and I’m still enjoying myself. I’m still enjoying my life and not having a penis isn’t stopping me enjoying my life. I’m not having the fulfilment of life as a bloke but I’m alive and I’m happy and I’m talking to you. And I’m trying to give advice to other people whereas if I hadn’t had it cut off, would I still be here trying to tell people or advise people not to get despondent in any way? Look forward because there’s always a light at the end of the tunnel. And that‘s my own personal advice to anybody.
 

 

Rodger feels that for most men there will be light at the end of the tunnel, although he...

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Age at interview: 65
Sex: Male
Age at diagnosis: 63
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Always look on the bright side because at the end of the day there’s always light at the end of the tunnel and it’s up to them to have the strength to actually think that and carry on. I know in some cases it can’t be the case because obviously it can be terminal and it can be painful... but as I say I’ve been lucky and it’s not been either of them.

 

Frosty believes people who are positive recover quicker.

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Age at interview: 68
Sex: Male
Age at diagnosis: 65
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Well you’ve got to be positive. I’m a great believer the surgeon said to me, “People who are positive, number one recover quicker, number two have more chance of a recovery and number three if you keep positive you’ll be positive all the way through anything that comes up.” And I think it’s true.

 

Tim advises that it’s not a death sentence and he found it helpful to look for the humour in his...

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Age at interview: 54
Sex: Male
Age at diagnosis: 53
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Oh I think the message is, it’s not a death sentence. It, yes it is life-changing. Yes, you’ve got to think about it, but think about it; talk about it; talk to people; be as open as you can about it. Because I find that’s been a great strength and great support that all sorts of people that – Yes, I’ve got lots of – lots of sympathy, lots of support from people who can sympathise, women as well, as well as men, who are very sympathetic to it. And where you can, and what’s helped me get through is looking, for the humour in it – there’s always, I’ve always found something to laugh about somewhere, and that’s helped me get through. And look at it positively like that and you know. And as I’ve said, perversely enjoying the experience [chuckles].

 

Frank Z suggests the main thing is to think positive and not to look back.

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Age at interview: 74
Sex: Male
Age at diagnosis: 73
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Well the main thing is I would, well it’s up to your consultant to be honest, is to get it resolved straight away. If you’ve got to have surgery, have surgery and get it resolved. But your main thing in life is to think positive. Don’t look back. You can reflect back and think about it, by all means. But you should think what forward. As I say I’m a forward-thinking person but it’s still at the back of your mind what the, your medical problems are.

Many of the men we spoke to talked about penile cancer being a treatable, curable and survivable disease. Several men offered encouragement to men who have been recently diagnosed with penile cancer, providing their own experiences as examples of how the illness can be survived.
 

Tom says penile cancer has a high cure rate and is likely to need a lot less treatment than other...

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Age at interview: 71
Sex: Male
Age at diagnosis: 69
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I would say that view it for what it is. That if you had skin cancer on the back of your thigh and you had to go an operation and have it removed you would think ‘oh, it’s not good’ but you wouldn’t think that it was sort of major and really effectively it is only the same thing, the fact that it’s in the more sensitive part of your body it doesn’t make the surgery any more difficult and it obviously can have a high cure rate and it’s less likely to need a lot of the treatments of other cancers which are internal which one hears about and which obviously make the headlines much more than this one does, and I would say you know, go with the flow, treat it for what it is and don’t get too uptight about it that at the end of the day it’s most likely to be resolved for you.

 

Mark says you should follow your specialist’s advice, accept whatever help is offered, maintain a...

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Age at interview: 48
Sex: Male
Age at diagnosis: 46
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I don’t know what stages they’re at, they’re either pre-op or post-op or whatever. But all the feelings and the misgivings and the and the fears that they have right now, are ones that I’ve already had. And we feel the same way we look upon life, we’re all the same, we’re all the same. We’ve all have the same apprehensions. We all have the same goals. And we just want to be right. And there will be occasions where, many occasions where, I know there was with me, where you just wondered whether there’s ever going to be a point where… they can… question whether they’re gonna pull through. You start questioning your own mortality. But… not to do that. You can. You just need to…you need to do as you’re told. You need to do what they ask you to do. You need to maintain a positive outlook and you can beat it. I’ve… it’s two years more or less to the day that I admitted myself into hospital, local hospital. And the progress, I’ve had three major operations in two years, and all the associated problems. And I’ve… I’m through it. I’m through it. I’m back up and about I’m at work. I’m proof, if proof were necessary, that you can you can get through it. You just need to be…you need to be very strong. You need to be… determined enough in your own mind... just don’t let it, just refuse. Push yourself, refuse to let it beat you. And you can. There were many occasions where I never thought about giving up, I never thought about not having a procedure done or not having a tablet or not having an injection. But it gets awfully tiresome. Month after month after month after month after month. It gets to a point where you think… that you start questioning whether what you’re doing is the right thing… It is. Just keep doing it. And take on board whatever help they give you. Don’t think you’re any less of a man for seeking some… some help from a counsellor. Don’t think you’re any less. Because that’s what they’re there for. They’re professional people. And it helped me immeasurably. And I wouldn’t be where I am right now if it wasn’t for that lady in [Name of town]. She’s performed miracles on me.

 
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John says even the more advanced cancers can be cured, and life after cancer can be just as rich.

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Age at interview: 75
Sex: Male
Age at diagnosis: 74
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Oh yes. It can be cured. And that’s not… I mean I you remember I told you I was the level 3 cancer that I had which was the most sort of virulent and I’ve been cured from it so… Yeah it will it could be uncomfortable but life you can get on with life but if it’s a young person I think that’s a different animal all together, you know. And I’m an older generation but… for someone younger....it must be devastating on the sexual side. I mean I don’t think there’s any of that answer for it, you know and... They’ll have to face up to problems which I haven’t faced up to. And as a complete… new way of looking at life. But the main thing is that that life can be just rich afterwards. And that these specialists know what they’re doing, yeh. They do. They know what they’re doing.

See ‘Support of others’ and 'Breast cancer in men- Peer support and support groups'.

Last reviewed July 2017.
 

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