Penile Cancer

Professional support for penile cancer

Men with penile cancer, their families and friends will rely upon the support of health professionals from diagnosis onwards. Since 2002, penile cancer has been treated in the UK in what are called ‘specialist supranetwork multidisciplinary teams’ that cover a population of at least 3 million. Within these specialist centres, each man we spoke to had a consultant and a nurse they saw at each appointment although there were changes as professionals moved jobs or retired. Additionally, these men received support from their local GPs and district nurses.
Receiving the diagnosis and talking about the treatment can be extremely difficult. While many praised the professional communication and support they received, a few men said they had gone into treatment unaware of the nature of their condition or the extent of the surgery they were having. Some would have liked more time to talk through the treatment options and the impact of treatments on their urinary and sexual functioning.

After treatment, some men felt that they would like information on what causes penile cancer but there was a lack of good resources. Simon used an information centre at his cancer hospital where a member of staff found lots of material relevant to his cancer. Others would have liked to have been put in touch with a support group. Mark wanted to know why he couldn’t have been treated at his local hospital, and Mick would have appreciated being told sooner about the hospital transport system, which could have saved him considerable time and money.
After treatment, men with penile cancer will often go home with bandages on, and catheters in, and will need to use their specialist centre or local primary care services as things heal. Many men attend their specialist centre for check-ups and if things aren’t healing as expected, they can phone to ask questions and arrange additional appointments. District nurses will make home visits to deal with bandages, dressings and catheters. Some men were disappointed by a lack of support at home after treatment and long gaps between appointments at their specialist centre. If men think that they need support with anything related to their treatment, they can contact their GP or specialist centre.
Receiving a diagnosis of penile cancer can have a significant psychological impact. While some men we spoke to received emotional support from various professionals, others were not offered any psychological help. Some hadn’t felt a need for any emotional support but assumed that it would be available on request. Others assumed it was not available and they had to cope alone. Specialist centres often put the telephone number of the specialist nurse on the back of a leaflet and many men and their partners found the opportunity to phone and ask questions helpful. Others hadn't made use of this but said it was comforting to have the nurse’s number. Some men said that a few kind words from a hospital specialist had given them strength; others had found it helpful to talk to Macmillan nurses or nurses on the hospital ward where they were treated. Some men had counselling, accessed either via their GP or Macmillan; others didn’t know this was available. John Z said he might have benefitted from counselling as he suffered from depression and mood swings.
Some men received other kinds of professional support. Michael was referred to a physiotherapist after reconstructive surgery because one of his legs was weak. When arranging visits for treatments and follow-up appointments, Frank talked to a transport manager at his local hospital and was given help with travel (see ‘Additional treatments’). Barry received help with his finances from his Macmillan nurse.

Last reviewed July 2017.
Last updated January 2015.


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