Penile Cancer Projects and Resources

Over the last 12-months we have made significant progress in developing new awareness initiatives and increasing the support for men affected by penile cancer. Thanks to the support and dedication of patient advocates and healthcare professionals, and our collaboration with European Advocacy Groups, we have been able to consolidate our ideas and aims for the future although there is still much to do.

As well as maintaining our Telephone Counselling Service and National Male Cancer Helpline, with penile cancer specific enquiries making up around 65% of calls, we have been able to develop several new resources funded by eUROGEN including a penile cancer information video in partnership with the European Association of Urology (EAU) Patient Advocacy Group. The English version of this video has had over 9000 views and a Spanish version over 7500 views since their release in July. The video can be viewed here.

Four Nations Penile Cancer Programme

In October 2023 we received funding for the Four Nations Penile Cancer Programme. This is a two-year nurse led project which will raise the profile of penile cancer throughout the UK. It is being led by Orchid Male Cancer Information Nurse Sinead Collins.

The project has three main aims:

  • Raise awareness of penile cancer in the four nations. This will be accomplished by the creation of four nation specific information posters, an introductory leaflet about the project and a fact sheet about penile cancer. In addition, Orchid are creating an interactive, electronic guide for allied healthcare professionals working outside of specialist networks. to provide an overview of the disease and a practical guide on how to support men in the community (see intital draft pictures below). These resources can be used by GPs, nurses, pharmacists, and other healthcare professionals and will be distributed via regional commissioning groups
  • Work with current regional treatment centres to increase the information and support available to men diagnosed with penile cancer. In early 2024 Orchid will hold a virtual meeting for Clinical Nurse Specialists within these networks to discuss current shortfalls in care and how the programme can help to improve them.
  • Encourage and develop virtual and sustainable physical peer support throughout the UK. Orchid will engage with existing peer support groups, specialist nurses, clinicians and advocates to promote peer support wherever possible.

Please email Sinead- sinead.collins@orchid-cancer.org.uk for more information.

Orchid Penile Cancer Hub

Orchids website information on penile cancer has now been redesigned to be part of a future penile cancer hub which we hope will become the most comprehensive online repository of penile cancer information in the world. Patient comment is included where possible, and anyone affected by penile cancer can anonymously submit their own insight and advice to help support other men. It can be viewed here.

The Year Ahead

Throughout 2024, Orchid will continue to develop and explore ways of increasing information and support for anyone affected by penile cancer. Current projects in development are:

Point of Diagnosis Leaflet

This will be a leaflet which can be given to anyone diagnosed with penile cancer at the point of diagnosis and will provide signposting to Orchid services as well as providing advice on initially coping.

Penile Cancer Legacy Project

This will be an ambitious, ongoing project to gather the largest collection of video documentation about the penile cancer journey, by virtually filming patients, advocates, and healthcare professionals from around the world talking about every aspect of penile cancer. The resulting footage will be edited and added to the relevant sections of the Orchid Penile Cancer Hub. Anonymity and privacy will be respected.

Information Resources Update

Our penile cancer booklet will be updated with a greater focus on practical information.

All these resources will be promoted via urological contacts, and relevant conferences throughout 2024 including the British Association of Urology Surgeons (BAUS), the British Association of Urology Nurses (BAUN), the European Association of Urology (EAU) and European Association of Urology Nurses (EAUN).

If you would like to learn more about any of the above, or would like to take part in future virtual support meetings, please email sinead.collins@orchid-cancer.org.uk or robert.cornes@orchid-cancer.org.uk

Alternatively phone the National Male Cancer Helpline on 0808 802 0010.

Information and Support

Information about current peer support for penile cancer within the UK can be found here.