Penile Cancer

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.
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.
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.
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.
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.
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.

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

Last reviewed January 2015.
 

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