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Penile Cancer

Information about penile cancer

When telling a man that he has penile cancer, health professionals will usually talk to him about what it is and how it can be treated and give the man opportunity to ask questions. It is often difficult to think of questions to ask immediately after receiving a diagnosis. Before attending an appointment, it may help to think of questions that are important. Health professionals, particularly in specialist centres, may give out contact details for nurses or support organisations who can be contacted for answers or help with questions or concerns (see Professional support for penile cancer’). At appointments with health professionals, it can help to think of questions in advance. Many of the stresses associated with being given a diagnosis of penile cancer come from not knowing what is going to happen.

 

Jordan’s wife was with him when he received the results of his biopsy; he found it difficult to...

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Age at interview: 58
Sex: Male
Age at diagnosis: 57
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And can you remember how the consultant revealed the results to you?

Yep, well I was with my wife again, and she supported me all the way through. I was waiting in the waiting room with various other people, because it was just a general surgery in the hospital. And he called me into a little room, and he and a female nurse, with a… and then he told me all the, the results of the biopsy, and of course I was a bit stunned. Then he said, ‘I hope you don’t mind the female nurse being here, because she is a proper cancer specialist.’ And she gave me her phone number and said, ‘If you want to talk about this feel free to do so any time.’ And she’d actually been through cancer herself. She was actually bald, which was rather interesting. So obviously she had fellow feeling and   maybe that’s why they used someone like that. So… I didn’t need to phone, but at least it was nice to know that the support was there.

How you did feel when you received that diagnosis?

Well, devastated. As I say, I’d never really been seriously ill before, so it was quite a bombshell, and I suppose it’s the not knowing the end result, which is that because it then was a case of ‘we’ll refer you to the specialist… in... the bigger hospital, which deals with, you know plastic surgery and cancer and urology and all that sort of thing.’ So they were the specialists for the area and it was a case of waiting for that. So obviously, my mind was in turmoil, ‘Will I, will I live? Will I be able to have a sex life? Will I be able to go to the toilet ok?’ All these sort to things. Will it spread? Etc. So that was the situation.
 

As penile cancer is rare, few people know anything about it or how it is treated. Some men we spoke to said they hadn’t realised it was possible to develop cancer of the penis, and many wondered what might have caused it. While Tom first learned about penile cancer when his nephew was diagnosed with it, clinicians and researchers know too little to say whether family relations are at risk.
 

Tom only heard about penile cancer when his nephew got it; his GP had never heard of it.

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Age at interview: 71
Sex: Male
Age at diagnosis: 69
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I don’t know how prevalent it is, I don’t know any statistics to say whether I’m unique or not as I say, I’d never heard of it until my nephew was diagnosed with it and then immediately afterwards, I get diagnosed with it and that seemed sort of you know, ‘oh, there must be a lot of it about then’ but perhaps there isn’t. Certainly my doctor had never seen it before and I think that, you know, it’s… I’ve no real further answer than that.

At the same time as receiving their diagnosis (see Hearing the diagnosis’), most were told about the way in which the cancer could be treated. This usually involved surgically removing part or all of the penis. As penile cancer is rare, GPs and even urologists may know little about penile cancer. Some of the men we interviewed received their diagnosis in a general urology department before being referred to a specialist penile cancer centre, often in a different hospital, where they were told in much more detail about how the cancer could be treated.
 

Simon was worried when he received his diagnosis, but when he got to the cancer hospital he felt...

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Age at interview: 65
Sex: Male
Age at diagnosis: 63
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So what were your immediate thoughts and feelings?

Oh absolutely, absolutely gobsmacked really. I were, I was quite worried, I were quite worried at the time, but. Once, once I got to the main cancer hospital in [city] it were totally different then. I felt like I was being informed and being, I was on the right road, you know [hesitation]. Once I got into there I was, he were a professor and he was absolutely clued up you know and I really felt that everything was going to be alright then. I hope it is.
 

 

Mark was confused about his diagnosis. He knew he had cancer but didn’t know where it was until...

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Age at interview: 48
Sex: Male
Age at diagnosis: 46
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I had yeah cancer, alright, where was it? He didn’t tell me where it was. It can be, it can be anywhere on your body. He didn’t say where it was. I know that I’d had a procedure…on my penis. But I didn’t know whether it was on there or in my groin or in my lymph glands or anywhere. He didn’t say. He just said that…that it was... that I’d got cancer and walked away.

Which… sort of further complicated it because you can’t get any information. You can’t…you can’t read up, which I tried to, because I don’t know what I’m looking at. I did find a couple of books where I was, where it gave you peoples’ experiences of being afflicted with cancer. But I wanted to know what mine was and I didn’t know. And like I said, I didn’t know up until seeing the gentleman at the other hospital. And he, because I’d asked him to, he spelt in out in no uncertain terms that I had penile cancer. And he did mention how rare it was. I can’t remember…I can’t remember how many people that get cancer get penile cancer. It’s a tiny, tiny amount. But by then I think you find out, you do, I think you find out lots about yourself as well. I was just, and anybody who knows me will tell you… I’m just... stubborn and I’m strong and I’m not feeble in any way- feeble minded. I’m not, not at all. And I decided to meet. There’s nothing I can do. I can maintain a positive attitude and try and keep myself well.
 

Even though tests may have revealed evidence of penile cancer, consultants may not be able to give men an accurate idea of the extent of the cancer until they try to remove it surgically. The consultant may not, therefore, be able to provide an accurate indication of what treatment will involve when the cancer is first diagnosed. It can be very hard for many men to cope with the ‘not knowing’. Nevertheless, the consultant may be able to draw a diagram to show what may happen to the penis.
 

Paul was left stunned after his consultant drew diagrams showing what the surgery would do to him.

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Age at interview: 61
Sex: Male
Age at diagnosis: 59
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Oh well the last consultant urologist, the one that done the surgery, when he examined me the very first time, he just like got a sheet of paper and started drawing diagrams of the surgery what he got to perform. And that was all that was told, that was all that was told to me, and that’s why I’ll never forget that evening actually, I was so stunned, shocked when I saw the drawings of what he’s was going to have to do, it, it’s just, it’s indescribable really, it’s just horrendous. And that was all that was told to me really.

Except for a few of the men who had been treated in the early 1990s, most were given written information by their specialist centre describing the treatment and the effects it might have on them, in addition to verbal explanations about what would happen. Many liked the focus of the written information on treatment because it was given at diagnosis when they were most interested in what they could do about the cancer, although some couldn’t bear to read it. Some said they had also been told about the charity Macmillan Cancer Support, but most hadn't contacted them.
 

Tom was given written information about penile cancer after being transferred from his local...

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Age at interview: 71
Sex: Male
Age at diagnosis: 69
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Were you given any information by the medical professionals?

Ah, I’ve got to think back, and be unsure on that, we were given information, yes ah, and I think it was when I went to the cancer specialist hospital because talking to the urology department at the local hospital, they were originally going to do the operation, they then transferred me to the specialist cancer unit and it was there that they gave me written information on penile cancer at that point. So we were able to understand it a little bit more but we were mainly understanding or trying to understand what would happen to me, not what had happened to me if you understand that, you know I’ve got it, ok I’ve got it how you going to get rid of it, that’s really what was [hesitation] the sort of thought in mind was.
 

Some found leaflets useful because it was difficult to take everything in during appointments, whereas others thought that personal conversations with professionals were the best source of information. Some men were wary of learning too much about their condition in case it frightened them, and only a few mentioned seeking additional information. Those who did look up information about penile cancer in medical books or on the internet found that it was purely factual, not very detailed, and there was nothing about other men’s experiences. Some men said a friend or relative, often wives, had looked up information on their behalf (see ‘The support from others’).
 
As surgery is the main form of treatment, it is possible that sexual and urinary functioning can be impaired after the operation although this depends on the size of the cancer and how much of the penis is removed. Some of the men we interviewed said that they had been told something about how treatment would affect their lives, including their sexual relationships and going to the toilet, but many felt they needed more information about these things. Jordan would have liked to have heard about the good and bad experiences of men who had gone through treatment.
 

Paul was told was that he would lead a normal sex life and after hospital appointments has many...

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Age at interview: 61
Sex: Male
Age at diagnosis: 59
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The consultant surgeon said like about the reconstruction surgery and then he said, “I’ve already done a few of these operations and the men I’ve seen after have been ok” but then he said to me, he said “you should be able to lead a normal sex life” so I don’t know whether that was false hope or, but that was really all I was told, I wasn’t really told. I mean you know perhaps it’s my fault where, when I do receive like even now when I go and see this consultant surgeon I suppose I should really be asking him questions of the future and what not but you tend to think ‘well he’s such a busy person’ you don’t like to hold them up, so once he’s examined me he says “oh everything looks ok at the moment” I’m happy then and I just, when I know I’ve come out of there again and there’s questions I should have asked but I don’t like as though I would feel as though I’m holding him up you know because you can imagine the amount of patients he’s got to see, so.

 

Les couldn’t think of questions and felt like he was blindly going along with things and hoped...

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Age at interview: 55
Sex: Male
Age at diagnosis: 41
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So did you largely go into the treatment blind not knowing how it would affect you?

Yeh a bit like a rabbit in the headlights really because you’re so stunned with it all and you just don’t know, what it is, what’s going to happen and you can’t even think of any questions because you don’t really know what you’re talking about [laughs]. You just sort of blindly go along with it and hope for the best.
 

 

David felt frustrated by a lack of information about ways in which he could help himself: he would have liked to know how other patients coped.

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Age at interview: 70
Sex: Male
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I think the thing that it probably that I’ve found frustrating at times is wanting to know right from the start about what was it I could do. And particularly with this lymph… with dealing with the remove of the lymph nodes which has been more of an issue I suspect really than the original operation for the penile cancer is the is what is it I can do for myself? How much should I be doing and not doing? Should I be physically exercising more? What about lifestyle? Diet? What about alcohol?  I went 6 months without alcohol after I had the lymph nodes removed and I’m pretty sure it did me a lot of good. The main consultant said the cancer consultant said it wouldn’t make any difference one way or the other. So I had a bit of alcohol since and I’m fairly con... fairly certain that I was probably better without it. But I think it really would be interesting to get a lot more data about what people do, what other people do and what their experiences are of dealing with the side effects I suppose and the social effects, you know. And it would be really important I think, really interesting to know a lot more about people’s experiences. And I think the, I think it it’s full of greyness. It’s not black or white and because what they say, what the consultant will tell me, the doctors will tell me, the nurses will tell me, the specialist nurse will say is well it all depends because everybody’s different. And of course I’m sure that’s right so I think giving specific advice is probably difficult.

But I think more experience, more knowledge could be gathered in these areas and I personally would have found it enormously helpful.
 

Some of the men we interviewed wanted to get on with treatment and didn't want to find out any more than they were told at their specialist centre (see ‘Hearing the diagnosis’).

Last reviewed July 2017.
Last updated January 2015.
 
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