“There’s more to being a man than having a penis.”
“There’s more to being a man than having a penis.” Just one statement from some of the respondents interviewed for Healthtalkonline's new module on penile cancer. While prostate cancer is the fourth most common cancer in the UK and there’s a wealth of information available, few people know about penile cancer, which sees 400 new cases diagnosed in the UK each year.
Some of the men interviewed for the research said they hadn’t realised it was possible to develop cancer of the penis and many wondered what might have caused it. Being diagnosed with penile cancer had made them consider what it was that made them a man. Several of the respondents said that they felt like they were less of a man and they worried that they would be unable to satisfy their partner sexually. Some were embarrassed and thought that people might notice they had less of a bulge in their trousers or shorts and some felt they couldn’t ask women out. The importance of partner support and being able to talk openly about the condition was crucial in how the men felt they were recovering both physically and emotionally.
David who was interviewed for the research thinks that his experience has had only a marginal effect on his sense of masculinity and says there’s far more to being a man than having a penis. He says: “I think your sex life changes as you get older anyway and it’s probably had a marginal effect. I expect it depends where you start thinking about masculinity in the first place, doesn’t it? I think there’s far more to being a human being and far more to being a man than just simply being dependent on a penis. That’s not to say it’s not a very important part of the body, obviously, but in terms of how I see myself as a man, as a person, it’s had no impact at all.”
Dr Peter Branney, Senior Lecturer in Social Psychology at Leeds Metropolitan, says: “One of the main things that came from the research was that although you’d think no-one would want to mention penile cancer, the men who were diagnosed felt it was easier to cope with when it was spoken about. Being open and honest and maintaining a sense of humour, despite the difficulties, enabled other people to offer help and reduce embarrassment. Particularly for those men who need reconstructive surgery, sharing the situation with family and friends boosted confidence and self-esteem and this was greatly valued in the overall recovery process.”
The UK is world leading in its treatment of penile cancer and, under a new organisational structure, patients are now treated by surgeons that see at least 25 new cases a year. This is hugely important as research shows that symptoms are regularly mistaken for a sexually transmitted disease, which can delay treatment. Health professionals do not always provide the correct diagnosis on the first occasion. The rarity of penile cancer can make diagnosis particularly difficult and primary health care professionals, such as GPs, may not always have the knowledge or experience to make a swift diagnosis. The research shows that sometimes a doctor suspected a bladder or prostate problem and did tests appropriate to those conditions, such as blood tests (including PSA, which is a test for prostate cancer), a physical examination to feel for an enlarged prostate, an ultrasound scan or a cystoscopy to examine the inside of the bladder, or a biopsy of the prostate gland. Some men were tested and given treatments for sexually transmitted diseases.
Primary treatment for penile cancer is surgery, which is often quick and pain free with regular follow ups to check the patient’s progress. The standard treatment for penile cancer is to surgically remove the cancer and any lymph nodes that are affected. The larger the cancer, the greater the amount of penile tissue that needs removing, which means that surgery can have implications for sexual activity and going to the toilet. Early diagnosis is extremely important as it can affect the type of surgery and the amount of penile tissue that has to be removed. Nevertheless, the surgery is technically uncomplicated, most men quickly recover good physical health and the chances of cure are high.
As penile cancer is rare, few people know anything about it or how it is treated and men will not always have the opportunity to speak to other penile cancer patients at the hospital where they are being treated. One interviewee commented that, “If we talked about penile cancer more openly, then people might be diagnosed quicker and be better equipped to cope with both the physical and emotional impact of the condition.”
The award winning experiential website – www.healthtalkonline.org – provides a plethora of resources based on interview research carried out by the Health Experiences Research Group, University of Oxford. For this new module, the Research Group collaborated with researchers from Leeds Metropolitan University who interviewed 27 men about their experiences of penile cancer. The real-life accounts, all from people with direct experience of the disease, cover a range of themes from recognising signs and symptoms, the types of surgery, recovery and sex and relationships following surgery.
Dr Peter Branney, who with his colleagues conducted the research, says: “The UK is world leading in the treatment of penile cancer, yet our research shows the symptoms are regularly mistaken for a sexually transmitted disease, which delays treatment. We need to open up and talk more about penile cancer as we do with prostate and testicular cancers. Then men might be diagnosed faster and be better equipped to cope with both the physical and emotional impact of the condition.”
Rebecca Porta, Chief Executive of Orchid, says: “As the UK's leading charity to focus solely on services and support for people affected by male-specific cancer, we are delighted to support Healthtalkonline’s new penile cancer module. This will compliment the work we are doing in leading the development of new ways to inform and support the many patients diagnosed and living with penile cancer every year.”
John Edwards has recently had surgery for his cancer. When he was first diagnosed at the age of 44 and before services were reorganised, he was treated with radiotherapy and had to have a mould made of his penis. He says: “The funniest thing was being in a waiting room with two men who just did not want to talk. We were all just very nervously looking at each other. Talking about penile cancer is funny - I’m relaxed about it, I think that’s what I have, what I live with but it still terrifies people. It’s like breast cancer really, I talk to a lot of women about that.”
Steve was 65 when he was misdiagnosed with and treated for herpes. It was three years before he was diagnosed correctly. He didn’t tell anyone until after his surgery but has found it easier to be open about it since. He says: “Obviously being a bloke when you’re going to a public loo you have a problem after the operation. So if anybody says anything you tell them straight what it is and if anybody wants to take the mick, they shut up straight away, because as soon as you mention the words ‘I’ve had a cancer operation’ they stop dead.”
Tim (54) feels that his sense of masculinity has been affected but his wife is quite happy and he has taken positives from his experience. He says: “Our sex life is back to something approaching normal or something slightly different and certainly no worse than it was before. Perhaps after nearly thirty years of marriage things had got a bit routine, a bit regular, and this has forced us to spice things up. So that’s a positive reaction on that line.
“I thought it might have an impact on my confidence and self-esteem and I was prepared for that, but I think the way that I’ve approached it by looking at it; facing it; trying to see the humour in it; trying to talk about it, telling people about it rather than hiding away, has made a difference. If I’d been ashamed or afraid to talk about it, I would have found it harder to deal with. You know, I think people see me as, ‘Tim’s had that operation done that none of us would like to have done’, and so I’m officially brave.”
A press preview of the new section on penile cancer can be viewed at: Penile cancer module on Healthtalkonline. It will go live to the public on 23 October 2012.
The research for the new section was conducted by Dr Peter Branney and Karl Witty at the Centre for Men’s Health, Leeds Metropolitan University, in conjunction with Aberystwyth University and the Health Experiences Research Group, University of Oxford.
Dr Peter Branney is available for media interviews. Case studies are also available. Please contact Nicky or Gemma to arrange a briefing or for further information and images.
Gemma Bessant/ Nicky Rudd
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www.healthtalkonline.org is an experiential website based on qualitative research led by experts at the University of Oxford and published by the DIPEx charity (registered charity No 1087019). It is funded by a wide range of statutory bodies and charitable trusts and is recognised by the Department of Health and many other professional organisations.
The website, which in 2011 celebrated its tenth anniversary, has more than a million hits a week and two million unique visitors every year. It comprises video and audio clips from interviews with over 2,000 people about their experiences of more than 70 health conditions.
DIPEx gratefully acknowledges the support of Research for Patient Benefit, National Institute for Health Research (NIHR).
About the Centre for Men’s Health, Leeds Metropolitan University
The Centre for Men’s Health at Leeds Metropolitan University is internationally recognised as a lead organisation in understanding, challenging and improving men's health. Established in 2007 by the world’s first Professor of Men’s Health, Alan White, and expanded in 2008 with the arrival of Professor Steve Robertson, it has developed an interdisciplinary portfolio of research addressing the physical, psychological and social determinants that impact on the health of men. The Centre recently coordinated and ran the State of Men’s Health in Europe project commissioned by the European Commission.
About The National Institute for Health Research (NIHR)
The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. Since its establishment in April 2006, the NIHR has transformed research in the NHS. It has increased the volume of applied health research for the benefit of patients and the public, driven faster translation of basic science discoveries into tangible benefits for patients and the economy, and developed and supported the people who conduct and contribute to applied health research. The NIHR plays a key role in the Government’s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. For further information, visit the NIHR website (www.nihr.ac.uk).
Orchid is the UK’s only charity working on behalf of anyone affected by or interested in a male specific cancer – prostate, testicular and penile cancer, and provides a comprehensive range of services:
i) Orchid offers an information service staffed by specialist Male Cancer Information Nurses, a portfolio of publications, Factsheets, research updates, an award winning DVD ‘Know Your Balls…Check Em Out’, resource packs, a dedicated website www.orchid-cancer.org.uk and newsletter. Our services are free of charge. Demand for these services is increasing year on year - in the last 12 months alone we distributed over 208,000 items of information.
ii) A Pioneering, World Class Research Programme which aims to encourage, support and fund research into the causes, prevention and treatment of male cancers.
iii) Education Campaigns and Raising Awareness - on a national level Orchid raises awareness of male cancers and educates men in the signs and symptoms of cancer. We work closely with healthcare professionals, other voluntary organisations, community groups and support networks, schools, universities, local companies and the media.
The annual Orchid Male Cancer Awareness Week in April has become a recognised campaign in the national healthcare diary.
This press release was distributed by SourceWire News Distribution on behalf of Padua Communications in the following categories: Medical & Pharmaceutical, Men's Interest, Health. For more information visit http://www.dwpub.com/sourcewire