Sharing experiences

Many people who have experienced illness find sharing their feelings about their experiences to be helpful. Talking to people, in similar positions to oneself, can be a positive way of coping and may provide benefit to both parties. Many of the men we spoke to said they would have liked to hear about the experiences of other men with penile cancer to help them cope with their illness and its treatment. Others said they wouldn’t seek out other patients but would be happy to talk to any they met. Some were wary of speaking to other men about sexual difficulties arising from their treatment, and others had no desire to share their experiences at all.

Colin would like to be able to compare other mens feelings and experiences with his own.

Age at interview 62

Gender Male

Age at diagnosis 62

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Some men we spoke to had known other men with penile cancer or had met other patients while in hospital. In some cases, the men gave their clinical team permission to pass on their contact details to men who would want to speak to another person with penile cancer.
As penile cancer is a rare condition, men will not always have the opportunity to speak to other penile cancer patients at the hospital where they are being treated. It may be helpful to talk to men who have undergone treatment for other cancers or have had similar treatments. On the Internet there are a variety of support groups for cancer, which can provide a way of speaking to others about penile cancer (see ‘Resources‘).
If it is not possible to speak to other patients, sharing thoughts, fears and anxieties with friends, family or those in a helping role can provide a great deal of relief from the stresses which penile cancer patients may experience. Several of the men we spoke to talked about the importance of sharing emotions.

Frank talks about the importance of accepting the positive diagnosis and sharing doubts and fears.

Age at interview 77

Gender Male

Age at diagnosis 72

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Jim says that there is nothing to be ashamed of, so dont keep it to yourself.

Age at interview 60

Gender Male

Age at diagnosis 58

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Sharing experiences can equip men with valuable information, we asked the men we spoke to if they had any advice for other men who have recently been diagnosed with penile cancer or suspect that they may have penile cancer. One of the key messages which the men wanted to pass on to others was the importance of swift help seeking. Steve emphasised the importance of being assertive as a patient, and not taking no for an answer if you know something is wrong. Reflecting on their own experience, many men felt that if they had sought help earlier then they may not have needed treatments as radical as some received. Some men also felt that their initial fears and anxieties were proven to be unfounded once they had received help.

Steve tells other men to make sure you get to see the right person if you have something wrong.

Age at interview 71

Gender Male

Age at diagnosis 65

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Tom recommends seeking medical advice quickly for any problems as earlier detection usually leads…

Age at interview 71

Gender Male

Age at diagnosis 69

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Some men talked about the importance of accepting the diagnosis, once penile cancer has been confirmed. These men believed that by achieving this acceptance men would be able to move forward and work towards getting better.

David believes that at first you must accept the diagnosis and then you can move forward.

Age at interview 70

Gender Male

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Many of the men talked about the importance of using humour and adopting a positive attitude. Being positive and finding moments of humour in their experience was seen as an effective way of getting through the illness and enjoying life after treatment had finished.

Barry talks about still enjoying life after surgery.

Age at interview 66

Gender Male

Age at diagnosis 51

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Rodger feels that for most men there will be light at the end of the tunnel, although he…

Age at interview 65

Gender Male

Age at diagnosis 63

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Frosty believes people who are positive recover quicker.

Age at interview 68

Gender Male

Age at diagnosis 65

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Tim advises that its not a death sentence and he found it helpful to look for the humour in his…

Age at interview 54

Gender Male

Age at diagnosis 53

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Frank Z suggests the main thing is to think positive and not to look back.

Age at interview 74

Gender Male

Age at diagnosis 73

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Many of the men we spoke to talked about penile cancer being a treatable, curable and survivable disease. Several men offered encouragement to men who have been recently diagnosed with penile cancer, providing their own experiences as examples of how the illness can be survived.

Tom says penile cancer has a high cure rate and is likely to need a lot less treatment than other…

Age at interview 71

Gender Male

Age at diagnosis 69

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Mark says you should follow your specialists advice, accept whatever help is offered, maintain a…

Age at interview 48

Gender Male

Age at diagnosis 46

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John says even the more advanced cancers can be cured, and life after cancer can be just as rich.

Age at interview 75

Gender Male

Age at diagnosis 74

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See ‘Support of others‘ and ‘Breast cancer in men- Peer support and support groups’.

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...