Penile Cancer

Peter: I started with a small itch in the penis and each night it got gradually worse so I thought I’d better go and see a doctor about it and they treated it with Canesten cream. But after a period of a matter of a few weeks it didn’t subside any, and in fact it got really worse.

Frank: When I first realized something was wrong, the main symptom, the symptom was difficulty in urinating. And then gradually the, if I describe the penis the opening of the penis started to close and it started to form a skin over it. And within three or four weeks I was in tremendous pain.

Tim: By that time I was starting to get used to people prodding me down there, so... He was, he was very chatty, very helpful, and he said, he said, ‘Right, I think there is something that we need to look at. It’s probably nothing, but err but you do realise we’re talking about penile cancer here.’ And he said, ‘Oh, oh there’s just a very slim chance.’ And I said, ‘OK, what sort of chance is it?’ And he said, ‘10%.’ And to me that suddenly started to sound much more than a slim chance. It started to be serious. And there was a definite chance there.

Steve: But it's, it's just a word cancer it’s beatable. And, all things in life are beatable so-. It's upsetting, it makes you feel nervous about what the future is, but just keep a positive attitude to it and you can work through it.    

Tom: And I had an operation whereby they removed the whole of my foreskin. They took some, for want of a better term, some lumps off the side and the end of my penis and I didn't feel a thing because obviously I was unconscious at the time. I was rather surprised to be out of the hospital within 24 hours. Back home and not really inconvenienced too much. I’d obviously a lot of swelling, a lot of disfiguration, but all my bodily functions - I could go to the toilet, I could pass water without any problems. And, you know, I was sort of, well, quite, quite relieved that that particular part of it was over.

Jim: I’ve sort of shared this 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.

Ian: Well, I got, I did go back every three months but now they put me to every 5 or 6 months. Simply because if it doesn't come back in the first two years, there's a chance it won't come back in up to the next three years making it five. So I'm just keeping my fingers crossed that I get to five and without any problems, but -.  That’s all you can hope for.

Karl Witty and Peter Branney introduce the penile cancer site.

Karl: Penile cancer is a really rare condition. Only 400 people, on average, in the UK are diagnosed with penile cancer each year. Treatment for penile cancer is pretty effective. The main type of treatment is surgery, so that would be partial amputation, or total amputation, or what is called a glansectomy which is removal of the head of the penis, and that will usually result in a positive outcome for the patient.  Survival rates for men diagnosed with penile cancer in the early stages are very good, so at least 80% of men diagnosed with penile cancer in the early stages can expect to live beyond 5 years.

Peter: The research we conducted for the penile cancer website was a collaborative project with Aberystwyth University, Oxford University, and St James Hospital, who were all collaborating with Leeds Metropolitan University to interview men from across the UK who have been diagnosed and treated for penile cancer.

Karl: In order to collect the data I used this camera. I went into men’s homes and asked them to describe their experiences of penile cancer: the treatment for penile cancer, the diagnosis, the impact which that diagnosis had on their lives. To gain the data I asked a very open question to start with. So the question was ‘from the point of where you found there may be something wrong can you tell me your experiences of penile cancer’. And that opened up their stories, their narratives. From that I was able to fill in the gaps by asking various supplementary questions. Questions about their experiences in regard to sexual function, in regard to urinary functions - so how their treatment impacted on how they used the toilet, and how it impacted on their mental health and wellbeing.

Peter: One of the most surprising findings from the study was that once people opened up about their condition and started talking about it that they really felt relieved about that and felt that they could get support from other people. We can encourage men to open up more about penile cancer by using the penile cancer website because they can go to that and find material, information about how other people experience the condition. It is an extremely rare condition, they are unlikely to ever meet somebody who has had it, or meet somebody who has heard of somebody who has had it but they can access this website 24 hours a day in the privacy of their own home, or with friends and family, and some of the chaps did talk about using the internet to find information about penile cancer so this website will have information about other people’s experiences.

Karl: A lot of the men who took part in the study had a very convoluted route to being diagnosed with penile cancer. Some men were referred from their GPs to a sexual health clinic, and some men were referred to dermatologists. For many men it took many months before they actually received a diagnosis of penile cancer. As with many diseases it is important to receive an early diagnosis and with the early diagnosis you are more likely to have more effective treatment and a better outcome.

Peter: The good thing about the website is that it’s an amazing teaching resource so that when we are teaching doctors or nurses or physiotherapists or primary care nurses, when we are teaching them about penile cancer we can show them video clips of the patient’s experiences which will really bring it alive to them.

Karl: This research study is really really important. Penile cancer is an extremely under-researched topic and the recommendations, the guidelines on how to treat penile cancer are very very sparse. Through studies like patients’ experiences of penile cancer we are able to build up a greater understanding of how men experience treatment, experience diagnosis of penile cancer, and by gaining their understanding  we are able to make recommendations on how to better develop resources, information resources, for men and the care of men who have been diagnosed with penile cancer.

Peter: The future for this research is to share it as widely as possible so we are going to launch the website at an event in London, and we are going to give talks to health professionals. We are going to integrate it into teaching within universities across the UK. We are going to talk at conferences and we are going to make sure we talk to the health professionals at the specialist centres that manage penile cancer.  And there is also another cancer called urinary bladder cancer that affects much more people, it affects men and women and it’s similar in terms of affecting urinary and sexual function so I think there is a lot we could learn from running the penile cancer study, from the impact it has on people’s lives, to conduct the same study on urinary bladder cancer.