Penile Cancer

Information

When telling a man that he has penile cancer, health professionals will usually talk to him about what it is and how it can be treated and give the man opportunity to ask questions. It is often difficult to think of questions to ask immediately after receiving a diagnosis. Before attending an appointment, it may help to think of questions that are important. Health professionals, particularly in specialist centres, may give out contact details for nurses or support organisations who can be contacted for answers or help with questions or concerns (see Professional support for penile cancer’). At appointments with health professionals, it can help to think of questions in advance. Many of the stresses associated with being given a diagnosis of penile cancer come from not knowing what is going to happen.

As penile cancer is rare, few people know anything about it or how it is treated. Some men we spoke to said they hadn’t realised it was possible to develop cancer of the penis, and many wondered what might have caused it. While Tom first learned about penile cancer when his nephew was diagnosed with it, clinicians and researchers know too little to say whether family relations are at risk.
At the same time as receiving their diagnosis (see Hearing the diagnosis’), most were told about the way in which the cancer could be treated. This usually involved surgically removing part or all of the penis. As penile cancer is rare, GPs and even urologists may know little about penile cancer. Some of the men we interviewed received their diagnosis in a general urology department before being referred to a specialist penile cancer centre, often in a different hospital, where they were told in much more detail about how the cancer could be treated.
Even though tests may have revealed evidence of penile cancer, consultants may not be able to give men an accurate idea of the extent of the cancer until they try to remove it surgically. The consultant may not, therefore, be able to provide an accurate indication of what treatment will involve when the cancer is first diagnosed. It can be very hard for many men to cope with the ‘not knowing’. Nevertheless, the consultant may be able to draw a diagram to show what may happen to the penis.
Except for a few of the men who had been treated in the early 1990s, most were given written information by their specialist centre describing the treatment and the effects it might have on them, in addition to verbal explanations about what would happen. Many liked the focus of the written information on treatment because it was given at diagnosis when they were most interested in what they could do about the cancer, although some couldn’t bear to read it. Some said they had also been told about the charity Macmillan Cancer Support, but most hadn't contacted them.
Some found leaflets useful because it was difficult to take everything in during appointments, whereas others thought that personal conversations with professionals were the best source of information. Some men were wary of learning too much about their condition in case it frightened them, and only a few mentioned seeking additional information. Those who did look up information about penile cancer in medical books or on the internet found that it was purely factual, not very detailed, and there was nothing about other men’s experiences. Some men said a friend or relative, often wives, had looked up information on their behalf (see ‘The support from others’).
 
As surgery is the main form of treatment, it is possible that sexual and urinary functioning can be impaired after the operation although this depends on the size of the cancer and how much of the penis is removed. Some of the men we interviewed said that they had been told something about how treatment would affect their lives, including their sexual relationships and going to the toilet, but many felt they needed more information about these things. Jordan would have liked to have heard about the good and bad experiences of men who had gone through treatment.
Some of the men we interviewed wanted to get on with treatment and didn't want to find out any more than they were told at their specialist centre (see ‘Hearing the diagnosis’).

Last reviewed January 2015.
Last updated January 2015.
 

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