Once a diagnosis has been given, some of the men we spoke to were very open and were happy to talk about their diagnosis with anyone who asked. Some men talked about telling a few people and letting the news spread.
For other men the issue was just too sensitive to speak about with others. Some men were able to discuss their diagnosis with close friends or family although others kept it private.
Revealing a diagnosis of penile cancer to children and young people can be particularly tough. For some of the men we interviewed, it was important to manage the information which was given to younger relatives, either shielding them from what was going on or being more general, as opposed to giving details about their condition.
Most people will never have heard of penile cancer although they may know of someone who has had another cancer. There will be a range of responses when people hear that someone has penile cancer; surprise, shock or confusion; sadness, worry, a loss for words, a sense of awkwardness.
Telling friends and family about the diagnosis can lead to offers of sympathy and support.
When people ask about penile cancer, many of the men found that saying that it was a rare cancer was sufficient and awkwardness prevents any further questioning. Others did want to know details about the illness and how it is treated. Family may be interested in whether the condition is hereditary and will be passed from parent to child or whether brothers of the man are at risk and should seek medical advice.
Being open and talking things over with family and friends can also be beneficial to others as well as men who are experiencing the illness. Some people felt that they strengthened their family by telling them and allowing them to ask questions and share their concerns.
Hospitals usually group treatments and consultations into clinics by condition. When having a consultation it is possible that other men in the waiting room have penile cancer although none of the men we interviewed discussed their condition in this environment. Treatments may be provided in either urology or cancer wards. Because of its rarity, it is very unlikely that there will be other men with penile cancer in the same ward. There are however, likely to be patients with similar concerns, such as waiting for surgery and using catheters to urinate. Some of the men we interviewed discreetly shared their diagnosis on the ward although they didn’t feel pressured to reveal the details.