Penile Cancer-The Way Forward
Penile cancer presents a difficult challenge, both in raising awareness of the disease and providing support for those who have been affected. Many people will never have heard of it and many Health Care Professionals (HCPs) will never have encountered it and will therefore be unfamiliar with its treatment, side effects and the physical and psychological changes it can cause.
Improving this situation requires the engagement of patient advocates and HCPs, as well as international orginisations involved in patient advocacy.
Orchid is committed to facilitating this and is involved in a number of initiatives to increase awareness and long term support for anyone who has been affected by this rare disease. Details of these and other sources of support can be found below.
Advocacy and Support
Orchid currently facilitates regular virtual penile cancer support meetings. These are designed to bring those who have been affected by penile cancer together with HCPs who are working in the field of penile cancer in a show of solidarity and support. In this way both groups can learn from each other and continue to promote awareness, education and peer support. Further information about these meetings can be found here
As a result of this initiative Orchid Nurse Rob Cornes and penile cancer advocate Mr Wayne Earle were able to create an important assessment of the current unmet needs in penile cancer by surveying the largest online penile cancer support group in the world; Penile Cancer Awareness and Support (closed Facebook group). The results of this survey formed the basis of an article published in the journal Seminars in Oncology Nursing.
European Reference Networks for Rare Urological Diseases (eUROGEN)
Orchid is working closely with eUROGEN a European orginisation dedicated to improving the outcomes for rare urological conditions by enabling equitable access to diagnosis, treatment and care for patients across Europe. Orchid Nurse Specialist Rob Cornes and two penile cancer advocates have helped increase the reach of eUROGEN by taking part in Webinars and Conferences such as the European Association of Urology (EAU) Annual Congress 2022. Both penile cancer advocates have also been involved in updating the current EAU Guidelines for penile cancer, a huge achievement, providing a much better recognition of the long-term issues which men may experience as a result of treatment and the need to expand the support which is currently available. The Guidelines can be viewed here
EAU Patient Advocacy Group (EPAG)
Orchid Nurse Specialist Rob Cornes is also honoured to be representing penile and testicular cancer advocacy for the EAU Patient Advocacy Group. This group is dedicated to involving charities, orginisations and advocates in the decision making process, helping shape future recommendations and improving the quality of care for urological patients.
More information about Orchid`s collaboration with these two orginisations can be found here
Global Society of Rare Genito-Urinary Diseases (GSRGT)
Orchid are honoured to be associated with this global orginisation
Orchid provide a freephone UK National Male Cancer Helpline for anyone who has been affected by penile, testicular and prostate cancer and a Telephone Counselling Service for anyone affected by penile or testicular cancer. More information on the counselling service can be found here
Orchid currently provides written and downloadable information on penile cancer and its treatment. This information can be found here
Peer support for men and their partners affected by penile cancer is not as readily available as it is for more common cancers such as prostate cancer. However there are some groups acheiving this. For more information about these groups please click here
Penile Cancer Advocates
Orchid is extremely proud to be working with a number of men who have been affected by penile cancer and who are providing advocacy and support to the general public and allied Health Care Professionals. To read more about their work please click here
International Penile Cancer Awareness Day
In 2020 Orchid suggested that an International Penile Cancer Awareness Day should be recognised as 20th September. The first day was celebrated with an online conference for healthcare professionals, patients, advocates and survivors offering a unique opportunity for all to come together to share their insight, experience and provide peer support.
Each year Orchid will strive to promote International Penile Cancer Awareness Day by engaging with health care professionals, medical organisations, survivors of the disease and advocates through social and other media.
If you would like to learn more or want to help promote this day please contact firstname.lastname@example.org
The Way Forward Objectives 2023-2024
To see a plan of intended projects to increase awareness, support and information over the next year please click here
The Penile Cancer Ribbon Story
In 2017 John Francis Grasso was diagnosed with penile cancer and decided to design a ribbon to raise awareness of the disease. In his own words;
“One of the most powerful lessons I’ve learned is that the rarer a cancer is, the deadlier it can be. Another lesson I’ve learned, is that men need to shed the stigma and start talking about our urogenital and sexual health. Lack of information is as destructive as misinformation. Finally, I’ve learned that I, as a survivor, have to be proactive in caring for other men with this cancer. This cancer is uniquely psychologically traumatic. When I was diagnosed with Penile Cancer, one of the first things I did was scour the internet for an awareness ribbon. An awareness ribbon by its very definition is a symbol of the fact that people know what you’re going through. We had none. It made me feel like no one knew because no one cared. But I knew, and I cared, and I needed other men to know that I knew, and I cared. So I created a ribbon of my own. I drew on other designs to craft ours. Penile Cancer is often caused by the HPV virus, just like Cervical cancer. So I made my ribbon two toned, like theirs. I had a symbol now. We need it. Anyone suffering does.”
Inspired by John`s story Orchid commissioned the design of a physical badge to represent his vision. We are very proud of this imitative and are the only charity to stock this badge which can be ordered here. All proceeds go towards our ongoing fight to raise awareness of and support those affected by the disease.
Reviewed November 2023