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Penile Cancer

Professional support for penile cancer

Men with penile cancer, their families and friends will rely upon the support of health professionals from diagnosis onwards. Since 2002, penile cancer has been treated in the UK in what are called ‘specialist supranetwork multidisciplinary teams’ that cover a population of at least 3 million. Within these specialist centres, each man we spoke to had a consultant and a nurse they saw at each appointment although there were changes as professionals moved jobs or retired. Additionally, these men received support from their local GPs and district nurses.
 

David appreciated his consultant’s ‘head on’ approach and found the specialist nurse helpful in...

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Age at interview: 70
Sex: Male
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And he told me that I should be able to err everything would function after the operation. That, you know, that there was a very, very good chance that it would, as I remember. But I also I also remember that I think I my wife was with me but I went in first on this occasion to see him. And then I think we said oh, you know, bring my wife in. And I think he said something she often she quotes this about him and he said that his first words to her was ‘I’ve just been explaining to your husband that he has cancer’. And so she was she had it head on probably as quickly as I did. So the story the story of the working with the consultant is that there’s never been any there’s never been any of the thing where of the consultant, which historically I believe happened a lot, where they told you very little or as little as possible. My experience has been that he tells it head on as soon as possible and immediately as possible so there is no absolutely no doubt. Which I have to say personally I would prefer that approach than being diffident or holding back or whatever. Though I think it is quite a lot to come to terms with, you know, very quickly. So anyway that after at that point, the other thing that I found extremely helpful as I did with the procedure when I had the atrial fibrillation, was the availability of a specialist nurse. And so because with all these things is that the, and particularly with where there’s cancer and where it does feel, because it is penile cancer it does raise all sorts of, well it raised some fears in me about what would be the implications. Would be able to have a any kind of sex life afterwards or whatever. The fact that it’s cancer at all, would it return? That’s probably the bigger one actually. It maybe makes a difference being older about what the implications are. But none-the-less it it’s quite a lot to work through.

 

Although most of the staff had been supportive and courteous, before treatment, when Mark felt...

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Age at interview: 48
Sex: Male
Age at diagnosis: 46
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I was sat down with the girl who I think … no longer works at the hospital. And she was very, very… she wasn’t understanding at all. Really not at all. To a point where I explained to her, I said to her ‘I think you’re being very rude and I think you have no idea about what I’m having to go through. And I’m not prepared to answer any more of your questions’. So I knew where my bed was and I left. And it angered me. It angered me that somebody could be so... the other people that I’d seen all the run up to it were all supportive, were all magnificent. And then I saw a flipside. Because at a point where I needed some solace, at a point where I needed some stability and some strength from somewhere, I had this lady being rude and discourteous. And I reported her. I don’t know whether that had anything to do with her no longer working there, I don’t know. But that was the only unfortunate episode. All the way along you know you’re going to get... you’re going to get bad news, you’re going to get news you don’t want to hear, you’re going to be in operations that you don’t want to particularly be under. But that was the only... the only blip. That was the only thing that I can actually point at somebody that weren’t very good.

Receiving the diagnosis and talking about the treatment can be extremely difficult. While many praised the professional communication and support they received, a few men said they had gone into treatment unaware of the nature of their condition or the extent of the surgery they were having. Some would have liked more time to talk through the treatment options and the impact of treatments on their urinary and sexual functioning.

After treatment, some men felt that they would like information on what causes penile cancer but there was a lack of good resources. Simon used an information centre at his cancer hospital where a member of staff found lots of material relevant to his cancer. Others would have liked to have been put in touch with a support group. Mark wanted to know why he couldn’t have been treated at his local hospital, and Mick would have appreciated being told sooner about the hospital transport system, which could have saved him considerable time and money.
 

Mick didn’t talk to his consultant about how treatment would affect his ability to have sex...

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Age at interview: 69
Sex: Male
Age at diagnosis: 67
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Were you given any information on how the surgery may affect you on a on a day-to-day basis, how it might affect your quality of life?

No not really, no. No like I said I mean at my age. I mean I was 68 when I had the operation and I think we were we were saying it was my sex life or owt like that. It…you know with my wife how she was, bless her, because I mean she died she was real poorly like, you know, she had septicaemia and all that, you know, and she just died. There was nowt in that way sex or owt because it... it might do on a younger person, you know what I mean, in their 50s, 40s or 50s, touching their 60s, you know with a… that’s about it. They might say something to them. But me, no they didn’t say nowt to me about it so... about my sex life or owt like that. They say I couldn’t have sex. They said I could have sex. So…there’s no... well I can still have sex if I want it. But I just got to go… I might have to get bit stronger Viagra. You know to get the feeling... or I might not have to, I might just get the feeling, with a younger person. I don’t know. I’ve never been through all that so I don’t know so I can’t tell anybody about that bit. If I were a person bit younger than me or... who has had this operation know more about that side than what I do.
 

 

Tim asked his consultant to draw a diagram showing how much of his penis he would lose but the...

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Age at interview: 54
Sex: Male
Age at diagnosis: 53
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I remember once we’d been told, once we were told that was the, that was the cure, that was what was going to happen; and then it was to the actual surgeon, the consultant who was going to do the operation. I thought that was the question that I went in wanting to know, and I thought actually I want him to draw - I want him to draw me a diagram. Cause he’s got – he had in his notes lots of diagrams of the penis and the where the growth was and I wanted him to see, to give me a sort of, you know, like a ‘cut-here’ line if you like, sort of, you know, he couldn’t, he said he couldn’t give me an exact, I imagine because he didn’t know, he didn’t know until he actually started the operation how far, how far the growth had penetrated, or whether it had gone into the penis or not so. But I was, I was given a rough idea and in my case we knew that it wasn’t going to be a complete [hesitation] removal, we knew, I knew it was really from the glans upwards, if you like, that it was going to go. And it turned out to be roughly what it was.

After treatment, men with penile cancer will often go home with bandages on, and catheters in, and will need to use their specialist centre or local primary care services as things heal. Many men attend their specialist centre for check-ups and if things aren’t healing as expected, they can phone to ask questions and arrange additional appointments. District nurses will make home visits to deal with bandages, dressings and catheters. Some men were disappointed by a lack of support at home after treatment and long gaps between appointments at their specialist centre. If men think that they need support with anything related to their treatment, they can contact their GP or specialist centre.
 
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District nurses provided emotional as well as practical support when they visited John at home to...

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Age at interview: 75
Sex: Male
Age at diagnosis: 74
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At this point I think I’ve got to mention that we have a district nursing service here and it is it can be second to none. The district nurses were absolutely wonderful. They came in every day. They helped me. They helped me. They dressed me because the problems were dressing the... dressing the wound. They came and they supported me. They chatted to me. They smiled to me. And it was absolutely wonderful. So physically they were there with me for the whole of my period of going through this and for all of my treatment. Dressing wounds… I didn’t have to go surgery. They came out to my house.

 

Waiting until the next appointment without any information or feedback after the operation left...

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Age at interview: 68
Sex: Male
Age at diagnosis: 64
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I was happy how the time elapsed between getting diagnosed and the extra operation being done. But there was no back-up really to tell me anything about it or what I was looking forward to in the future. I don’t think even now they after the examinations, it’s just ‘well we’ll see you in 6 months’ time’. There’s no’you’re doing alright at the moment’ or what have you. But no there was no… feedback from either the doctor or my surgery as to what was going to happen….really.

So how did that make you feel?

Well as I say bewildered. My step daughter looked it up on her computer and got as much information as she could. But I think it’s limited even on the computer. It’s very rare occurrence or it seems to be in general so there was not a lot of information available. I was told the consultant was the best in his field and so I said ‘well you’ve got to go with it now’ which I did really.
 

 

Mick has faith in his doctors; he doesn’t let his illness worry him and gets on with life as...

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Age at interview: 69
Sex: Male
Age at diagnosis: 67
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It’s just seeing the specialist, he checks it and that and everything, every so often when they send for me, I go. And like I say I’ve got to go on the 21st of this month. Just for a CT scan and see if it’s all clear, properly all cleared. And once this one, I think this will be my last one. And then I’ve got to go and see him in 6 months time, next year. I’ve already got my appointment for next year and all, you know to go and see him [chuckles] I’ve got it that early. But you get your appointments early to what you go in and say well I want to see you. I say that’s good about him. Sometimes they cancel you. But that’s only because there’s an emergency on and they can’t see you. That’s emergency operations. Which is that’s understandable. But the next appointment, you do go. So it’s…it’s err you know it’s alright. You know he just talks to you and just, well everything’s going alright. ‘How are you?’ ‘I’m alright. Getting on with my life. Getting on what I’m going to do and what I ain’t going to do’. It all doesn’t worry me anymore. It’s not worth it. If you let it worry you, it’s going to ruin your life. So you might as well just carry on what you... your normal life, what you’ve been doing before and don’t worry about it. You’ve got people to worry about it what knows more about it than what you do. Let them see to it. And let them worry about it. You just carry on your normal life and that’s how you want to be. Because if you let it worry you, you’re going to go down and if you go down that’s it. You’ll never get back up. So it doesn’t worry me. I just go... I go out for a pint and I go out for a game, a game of pool or snooker and that’s me. If I meet a young lady in the in the meantime, I meet them and that’s it. I’ll tell them what I’ve got and that’s it. It’s up to them. That’s how I do it. That’s my life and that’s how I’m sticking to it.

Receiving a diagnosis of penile cancer can have a significant psychological impact. While some men we spoke to received emotional support from various professionals, others were not offered any psychological help. Some hadn’t felt a need for any emotional support but assumed that it would be available on request. Others assumed it was not available and they had to cope alone. Specialist centres often put the telephone number of the specialist nurse on the back of a leaflet and many men and their partners found the opportunity to phone and ask questions helpful. Others hadn't made use of this but said it was comforting to have the nurse’s number. Some men said that a few kind words from a hospital specialist had given them strength; others had found it helpful to talk to Macmillan nurses or nurses on the hospital ward where they were treated. Some men had counselling, accessed either via their GP or Macmillan; others didn’t know this was available. John Z said he might have benefitted from counselling as he suffered from depression and mood swings.
 

After finding out about his diagnosis and proposed treatment, Mark wept uncontrollably but a few...

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Age at interview: 48
Sex: Male
Age at diagnosis: 46
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I needed a hand to get on to the bed. Got onto the bed, he had a quick look. His assistant, she had a quick look. And I remember saying to him it seems like it’s healing. And as I said ‘it seems like it’s healing’ I sat down and the gentleman just shook his head and he said, ‘It’s not healing Mark. It will have to be removed’. So from feeling alright to feeling the worst I’ve ever felt in my life was a matter of 5 seconds. And it was just the most devastating news I’ve ever had. I just couldn’t fathom how I was going to manage. How was I going to manage. How the hell am I going to manage? I saw no future. I saw no future for me. I didn’t…I never had... I never had silly thoughts. I call them silly thoughts…both you and me know what I’m talking about. I never had any thoughts like that. And I never felt sorry for myself. I’d just been dealt a real, real bad hand. And… when you get dealt a bad hand you’ve just got to do the best you can with the hand that you’ve got. And I was determined that were what I was going to do. and I remember coming out of there … and excuse the language but I think it’s quite pertinent to what I’m telling you, I came out of there and there were some railings outside the surgery and I leant on the railings and after 5 minutes prior I’d been told that I had penile cancer. That also that the operation that I had to have only 4 out of 10 survive and that the penis will have to be removed. I leant on the railings outside the surgery and wept uncontrollably. My father had gone to pick the car up to come and get me. And I happened to glance to my right and my consultant’s understudy, is a lady, and….just a consummate professional as they all are. And I happened to glance very slightly to my right, she was there and she put her arm round me. And I looked at her and I said ‘I’m going to die aren’t I?’ And in language that you would not expect of a woman in her position she said, ‘No you’re not going to fucking die’ she said. And that gave me so much. Little snippets, little bits that happened, little things that you see, little words that people say to you. And I said, ‘Are you sure?’. And she said, ‘Yeah’, she said, ‘You’ve got, what you’ve got is very serious Mark, let’s not get away from that, it’s serious. But I, and she said ‘more pointedly that gentleman in there will take it as a personal affront if anything happens to you’. She said, ‘He is the best in Europe, never mind the best of his country. He’s the best in Europe. You fight every inch of the way and I will be on one side of you and he will be on the other side. And if you want to get through it we’ll get through it’. And I immediately, immediately I felt stronger, I felt more equipped to deal with it. I knew I had people on my side.

And they’re proper people as well. You know friends can help you. But these are the people that you want batting for you. These are the people that you want on your side. And I immediately felt better. I immediately felt like yeah I think yeah I’m going to be alright. I’m going to be alright because she’s told me I’m going to be alright. She knows I’ve got a long old road but I’m going to be alright. And it was. It’s just little bits, little things that people say to you, you have to sort of cling on to. You need a little bit of hope. You need, you need to grab onto every little piece. And that was the first one. And there were a few more after that. But that was... that was err that was a turning point. Everything happened in one day within the space of about 5 minutes. Being told all the bad news, feeling awful…crying uncontrollably and then being told by somebody that

 

Tim found the specialist nurse helpful, both for talking about the illness and for organising...

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Age at interview: 54
Sex: Male
Age at diagnosis: 53
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The support that I had was again - comes back to the, I had the phone numbers of the uro-oncology nurses who were, who were very helpful. Quite often in a practical point of view, when I felt that the… when I felt that appointments weren’t coming through quickly enough, or that we weren’t seeing the right people. They were - they were very good at sorting those out and getting back to me. And when I first met them they were, they were both very good at just sitting down and talking through, you know just how serious penile cancer was, or how rare it was, and giving me information about other cases they’d seen, which helped give us some context to it.

Some men received other kinds of professional support. Michael was referred to a physiotherapist after reconstructive surgery because one of his legs was weak. When arranging visits for treatments and follow-up appointments, Frank talked to a transport manager at his local hospital and was given help with travel (see ‘Additional treatments’). Barry received help with his finances from his Macmillan nurse.


Last reviewed July 2017.
Last updated January 2015.
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