Penile cancer is very rare. Only 1 man in 100,000 will be affected and roughly 36,000 men will be diagnosed globally each year. It is most often diagnosed in men over the age of 60 years, but younger men can also be affected. It is usually a slow growing cancer and 70% of men will survive the disease. Unfortunately, many men may ignore potential penile cancer symptoms which may delay their diagnosis and lead to more advanced cancer. Read more about penile cancer here.
Talking to someone who has been through a similar experience to you can reduce feelings of isolation and encourage you to discuss how you feel more openly. Finding that you can reach out (anonymously if you wish), to someone who has been through the same treatment can dramatically improve your physical and psychological well-being.
The largest online penile cancer support group in the world is a closed Facebook Group called Penile Cancer Awareness and Support. It was originally set up by Mr Nigel Smith in 2011 following his own diagnosis of a particularly rare type of penile cancer and is now maintained by his daughter Tammy, and advocate and penile cancer survivor Mr Wayne Earle. The group has a global reach with over 470 current group members. Like all support groups there are people who will be in different situations or stages of the disease, some good and some not so good, but the group remains the most valuable source of peer support that we are aware of. Family and partners are also welcome to post on behalf of those affected.
UK based Support Groups
University College Hospital, Euston Square (UCLH), holds a penile and urethral cancer support group. The group meets on the first Tuesday of every month (excluding January and August) at the UCH Macmillan Cancer Centre from 12 midday to 1. 30pm.The meetings comprise an educational and supportive discussion that is open to all men regardless of the stage of their treatment journey. There is no need to confirm attendance and men can attend meetings as they wish.
For more information about the penile cancer support group contact Sadie Molloy, Clinical Nurse Specialist on 07852219921 or at email email@example.com
A support group for those affected by penile cancer meets every two months at the Maggie`s Centre Manchester and is supported by Orchid Male Cancer. This group meets on the first Wednesday of every month between 3-4.30 pm For further information about this group please email firstname.lastname@example.org or phone 0808 802 0010.
There is an independent monthly virtual support group, available on the first Wednesday of every month from 3-4pm. It was created by a young penile cancer advocate and is supported by both a Scottish Specialist Nurse as well as Orchid Nurse Rob Cornes. For more information, please email email@example.com or phone 0808 802 0010.
Orchid along with several health care professionals and penile cancer advocates, hold an online penile cancer support meeting every few months. The aim of this is to bring together those who have been affected by penile cancer with health care professionals who are working in the field of penile cancer in a show of solidarity.
Sometimes the group will have individual speakers or sometimes a general discussion. People from all over the world can attend these meetings virtually and if you would like to learn more, please email firstname.lastname@example.org