It only hit me once I was recovering what had happened and to take it all in. I was lucky as my wife cared for me while I was recovering and while going through that knowing there is a chance it may have spread to other parts of your body is tough on the both of you. It’s not knowing. If it wasn’t for my wife, I don’t think I would have been here today. I have had dark moments adjusting to a new way of life knowing my life will never be the same again but with the right support network I’ve got through it so far. I didn’t realise how much it affected my wife as she didn’t let on to me until a few weeks ago. You don’t realise how much it takes its toll on them as well.
The psychological impact of surgery cannot be underestimated. Any change to the appearance and function of the penis may cause a feeling of emasculation and the loss of normal sexual function can be devastating.
Although many men may shy away from any form of counselling it can be of enormous benefit and should be recommended and encouraged. General cancer counselling may be sufficient but more advanced therapy such as psychosexual counselling may be needed for more invasive treatment.
Orchid Male Cancer Telephone Counselling Service
In the UK Orchid Male Cancer has a free telephone counselling service for men affected by penile cancer. It offers six counselling sessions over the phone. It also offers a degree of anonymity which men may find beneficial, rather than talk face to face with a counsellor.
Peer support can be invaluable allowing men to reach out to other men who have a shared experience. The biggest peer support group that Orchid are aware of is an online closed Facebook Group called Penile Cancer Awareness and Support. The group has a global reach with over 500 group members.
Like all support groups there will be people who will be in different situations or stages of the disease. Men and/or their partners regularly share their experience and reach out to new members, but it is also important to emphasise that although there will be many inspiring and reassuring comments, there will also be men who face terminal disease and some negative experiences.
Family and partners are also welcome to post on behalf of those affected.
Some great people on here who will help you through, there to share stories and give support.
Without this group I wouldn’t have been able to cope. Hearing from other men who have been through what I have had has made everyday life so much easier.
I would not have got where I am today without the advice and support from fellow members.
Other 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 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 firstname.lastname@example.org
A support group for those affected by penile cancer meets every two months at the Maggie`s Centre Manchester and is supported by Orchid. This group meets on the first Wednesday of every month between 3-4.30 pm For further information about this group please email email@example.com 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. For more information, please email firstname.lastname@example.org 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 email@example.com
Reviewed November 2023