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Penile Cancer

Messages to professionals

Men will commonly be given a diagnosis of penile cancer by a consultant at a specialist cancer centre although their first point of contact will usually be their General Practitioner (GP). Diagnosis will usually come after the consultant has performed diagnostic tests, such as a biopsy or scan. Hearing that you have penile cancer can be extremely traumatic, and patients may experience a range of emotions (see ‘Hearing the diagnosis’). The way that a diagnosis is revealed can have a huge impact on a person. The challenge for professionals is to deliver the diagnosis in a way which will leave the individual patient feeling as equipped as possible to cope with the consequences of that diagnosis.
 
All of the men interviewed were cared for under the National Health Service (NHS) in one of the specialist centres across the UK. The majority of the men we spoke to were extremely happy with the standard of care that they had received.
 

Rodger talks about being totally happy with the service he has received from his consultant.

Rodger talks about being totally happy with the service he has received from his consultant.

Age at interview: 65
Sex: Male
Age at diagnosis: 63
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I think the service that I received from the consultant I can’t name has been exceptionally good. I’ve been very pleased with him, he’s asked me if I wanted to go back to my own hospital because of the travelling, I’ve said, ‘No, I am totally happy travelling here to see you because I know that I’m in the right hands.’

 

Jordan feels the NHS gets a bad press, but he couldn’t fault the service he received.

Jordan feels the NHS gets a bad press, but he couldn’t fault the service he received.

Age at interview: 58
Sex: Male
Age at diagnosis: 57
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Is there any other ways which you feel the service which you received could be improved?

No to be honest. I mean, we know the National Health Service is very stretched but I couldn’t fault it at all. And I’d recommend it to anybody. I do feel that the NHS gets a lot of bad press but I can only speak highly of it.
 

There were however, a number of men who felt that aspects of their care could have been improved. Several men talked about the need for a greater awareness of the signs and symptoms of penile cancer, particularly amongst primary health care professionals such as GPs. Some men called for better education and training of medical professionals in order to improve understanding of the signs and symptoms of penile cancer.
 

Tom believes that GPs should receive greater education on how to recognise the signs of penile...

Tom believes that GPs should receive greater education on how to recognise the signs of penile...

Age at interview: 71
Sex: Male
Age at diagnosis: 69
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My only comments would be that the GP, I feel to some extent, let me and himself down by not being able to recognise it in the first place and therefore it’s not the actual people dealing with it that really need further education but the colleges and medical studies profession that need to bring it more to the fore. There needs to be more general awareness you know, many of the other forms of cancer now, particularly breast cancer for instance, where there’s a screening process taking place on a regular basis, I don’t know what can be done about this but one would think that if you went to the doctor with it where it’s plainly visible to the naked eye, that it ought to be recognised and it obviously isn’t – I’m not condemning my doctor in any shape or form because you know, he obviously did not know and I think that that’s something that needs addressing at the source.

 

Mick feels that his GP should have been quicker in referring him to the hospital.

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Mick feels that his GP should have been quicker in referring him to the hospital.

Age at interview: 69
Sex: Male
Age at diagnosis: 67
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How about you know prior to the operation, in terms of the service you received from your GP?

No I don’t... from my GP? No it’s… he could have been a bit faster if he’d have knew. I’d have been there a lot longer and waiting. If he knew what was happening to me, if he knew straight away I had… it was 50'50 it was cancer or something else, he could have sent me to hospital as soon as he saw it. He should have known what it was. Instead of treating me for thrush, he should have known. I think what’s that for they go to all these universities for, to learn all this. He couldn’t have learnt his medical profession. He couldn’t have learnt properly. Not knowing that was either cancer or some other disease. I don’t know what other disease it… they thought it was but it was either one or the other. They could have known it wasn’t thrush. It didn’t even look like thrush. I could have been there a couple of months or a month or two months earlier... of me waiting two months longer or three months longer. They could have known. That’s all I was disgusted about. And if I could have done owt I would have done but I couldn’t.
 

Men also talked about the need for improvements to be made in how medical professionals revealed the diagnosis of penile cancer to their patients. Some men felt that a diagnosis was revealed without sufficient sensitivity and consideration of the impact which this diagnosis would have on a patient’s wellbeing, particularly where the diagnosis was delivered by someone who was not a penile cancer specialist. However, others felt dissatisfied if they had to wait until they saw a specialist before being told their diagnosis.
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Les feels that the health professionals should be better educated in revealing diagnoses.

Les feels that the health professionals should be better educated in revealing diagnoses.

Age at interview: 55
Sex: Male
Age at diagnosis: 41
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All I would say is on the breaking the news, don’t treat it so matter of fact. It’s sort of, it is a massive deal for a bloke to sort of hear they’ve got something like this, for anybody, with any cancers, but it just seemed to be a bit severely dealt with, it wasn’t sort of, because from where my diagnosis came from it was basically from a VD Clinic if you like and then I had a bit of surgery and then you’re told ‘look it wasn’t a wart, it’s cancer’ and this guy was saying ‘it’s. it’s a rare cancer, you should be alright, there shouldn’t be any problems’ but it would be nice to have some, somebody that you could talk to that knew something more about it because this guy said at the time like, you know ‘I’ve never seen one before and I’ve been doing this job for years’ so he has got no experience in this field so, perhaps a little bit more education for these urologists and stuff that are out there passing on the bad news.

 

Mark was told his diagnosis at the specialist centre but would have preferred to know his doctor...

Mark was told his diagnosis at the specialist centre but would have preferred to know his doctor...

Age at interview: 48
Sex: Male
Age at diagnosis: 46
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Do you have any advice for health professionals who are treating men who’ve been diagnosed with penile cancer?

I don’t think I’m in a position to give them any advice. My only my only criticism from my experiences was that I, like I said earlier, I suspected that they knew that I had penile cancer before they actually told me. Again, whether that would have altered anything I don’t know. I don’t know. They maybe did it for the best of intentions. But the fact remains that it was me. And I wanted to know. I wanted to know what it was. And I suspect that they knew for a while before I went to the other hospital to have it pronounced on me that this was happening. I’m not suggesting that it would have been…. apt to get it in a letter or anything like that. But I think if there was any advice that I could give the General Practitioner or whoever, if you know in your own mind that it’s penile cancer, tell them. Tell them as soon as you possibly can. It’s not something that they, I don’t think it would… it wouldn’t have worsened my situation. It wouldn’t have made my… it wouldn’t have made my situation any worse or any better. I don’t know. I doubt it. But at least I would have known a little bit earlier. And my trip over to the other hospital… I would have known that I had penile cancer. And I would probably have known that it was going to be removed. You’re never going to get away from the shock that you’re going to give to somebody when you’re given that news. That’s not possible. But I think it does help, the sooner you tell them, the better. And I like I say I think they probably knew a while before they told me. But I have nothing but admiration for anybody who’s been… who’s treat me. The General Practitioners, my surgeons, my… every single one of them. So I’m saying it a little bit tongue in cheek. I don’t think I’m in a position to give anybody of that standing any advice. But if there was then just to let them know sooner rather than later.
 

Others felt that medical professionals did not always equip men to deal with the consequences of a penile cancer diagnosis or provide men with adequate support once a diagnosis had been revealed, such as somebody to talk to who would listen to their concerns. One man felt it important that a third party such as a friend or family member should be present at the diagnosis to provide support.
 

Simon would like health professionals to give patients a bit more time when revealing a diagnosis.

Simon would like health professionals to give patients a bit more time when revealing a diagnosis.

Age at interview: 65
Sex: Male
Age at diagnosis: 63
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Apart, apart from perhaps a bit of a slower intro into it would have been better instead of just saying, you know, he were totally brutal the way I were told. They reckon it’s the best way of telling you. So, you don’t know. You know, it was a shock. I mean I were only there in my mind to be circumcised and to be told all at once that ‘you’ve got cancer’ you know it were like being hit with a shovel at the time.

The men we interviewed varied in how they wanted to hear the diagnosis. Some men felt their diagnosis could have been delivered with greater sensitivity. Others felt that an honest and frank delivery of the diagnosis was an important aspect of the service provided and recommended that this should be practised by all health professionals.
 
Although many men were given information about their cancer and subsequent treatments they were to receive (see ‘Professional support for penile cancer’), a number felt that their care could have been improved by the provision of more information. In some cases, the men felt that they would have benefited from information on how to cope with the implication of their diagnosis and treatment.
 

John Z thinks more information would have been helpful.

John Z thinks more information would have been helpful.

Age at interview: 68
Sex: Male
Age at diagnosis: 64
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Yes to be a bit more straightforward with the person. To inform… be more informative. I think I didn’t get a lot of information as to what was going to happen or what the results was going to be or anything like that. I think information would be very helpful, yes.

 

Tim feels that health professionals should help patients talk about their diagnosis and support...

Tim feels that health professionals should help patients talk about their diagnosis and support...

Age at interview: 54
Sex: Male
Age at diagnosis: 53
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I think it’s to help people talk about it. The ones I’ve had have all been very open and very helpful and willing to talk and also prompting, prompting me to talk. I can see in some situations, if I hadn’t been so open, perhaps the conversations would have been harder and it would have been harder for people to cope with. And also perhaps, yeah as I say, I could have done with a little, little more support about, and advance, about the practical implications of what could possibly, what could possibly go wrong. Or perhaps not go wrong, but what the what the implications might be.

Although not a key theme across interviews, the wife of one man felt that the care pathway for penile cancer could be improved. She was able to draw upon her experience of treatment for breast cancer and recommended that health professionals should follow the standard treatment protocol when managing men who have been diagnosed with penile cancer.
 

Colin’s wife felt there should be a standard care pathway for penile cancer similar to that for...

Colin’s wife felt there should be a standard care pathway for penile cancer similar to that for...

Age at interview: 62
Sex: Male
Age at diagnosis: 62
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Patsy' It would be nice to know that the consultant or the surgeon would have a proper procedure for this. You know did determine what degree of cancer it is, how they will proceed and what further protection they’ll take. Like with me with the breast cancer there was a procedure. Lumpectomy, glands under that... under the arm to test, and the tablets after. Which was a procedure they took with most people, unless it was a full mastectomy, didn’t they? But you did have a choice anyway. And this is what… there should be a procedure for this kind of matter as well. Once they get to know all the ins and outs. You know I know it’s probably a new… a rarity at the moment. But once they get it all together make it a procedure, like they do with breast cancer. They know exactly what they’re going to do… with the.. you know take the lymph nodes out anyway just in case.

Furthermore, one man would have liked advice from his consultant about anything he could do himself to slow the progress of his condition or prevent a recurrence.

Last reviewed July 2017.
 
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