I didn’t expect to be examining my own mortality at 46 years old. I’m fit, relatively young and have a healthy lifestyle – cancer doesn’t happen to people like me, at least not yet…. Wrong! One of the most destructive and pointless questions that I’m quite sure everyone who finds themselves in a similar position asks (and I did many, many times) is why me? Sadly there’s only one answer – Because it is; now get over it and go out and control the things that are in your power to control – leave everything else to the experts and lady luck.
For guys it is often very difficult to share intimate information and experience. I cannot imagine anything more intimate for a guy than talking about problems with his penis and fearing losing his manhood.
The support of my wife, family and friends has been vital in giving me the strength to deal with the uncontrollable aspects.
For partners I would say try to be patient and understanding. That’s very difficult if you are not a guy. Not that women cannot be like that, it’s just that for a guy the thought of losing your manhood, or acquiring another, is an end of the world as we know it scenario. And remember that your partner will still love you and have loving feelings for you – that includes sexual arousal too! (that doesn’t go away because you have penile cancer – if anything I reckon it increases)– so don’t think that YOU need to call it a day sexually just because your man has some work in progress…
Most people feel overwhelmed when they are told they have cancer, even if the chance of cure is very high. Many different emotions arise, which can cause confusion and frequent changes of mood. Men may experience all of the feelings that are associated with being diagnosed with penile cancer, such as fear, resentment and anger. This does not mean, however, that they are not coping with their illness. Reactions differ from one person to another- there is no right or wrong way to feel. These emotions are part of the process that many people go through in trying to come to terms with their illness. Partners, family members and friends often experience similar feelings and frequently need as much support and guidance in coping with their own feelings too.
Being given a diagnosis of penile cancer is emotionally and mentally devastating. Following diagnosis men should let your family know of any planned treatment and how it may affect them in the coming weeks or months. Although it may be hard to share this type of information many people including younger people, are, these days more likely to have some knowledge of different types of cancer and be aware of the potential issues that men may encounter following diagnosis and treatment.They may also be able to find information on your behalf from the internet or organisations such as Orchid.
Often the information that will be given at diagnosis will be overwhelming and men may not fully appreciate the implications of what is said until later on. It is a good idea therefore to make sure if possible that someone accompanies to hospital to help remember the information that they may be been given. Most supra networks will have a team of specialist counsellors who may be able to help men talk about their fears and worries during or after treatment and it is always a good idea to ask the specialist team if this is available.
If men do not feel that they can talk to their family about their diagnosis they may like to contact the following organisations who may be able to offer support.
Orchid also have a National Male Cancer Helpline (Monday, Wednesday and Friday 9.30 am -5.30 pm) staffed by an Orchid Male Cancer Information Nurse 0808 802 0010 for general concerns.
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 dip in an out of meetings as they wish. The group continues to remain well attended and has now been running for 18 months.
“It is really helpful to talk to other men who really get what I am going through” – Support group member
For more information about the penile cancer support group contact Clare Akers, Clinical Nurse Specialist (CNS) or Sadie Molloy, Clinical Nurse Specialist on 07852219921 or at email firstname.lastname@example.org
A support group for those affected by penile cancer no meets on a quarterly basis at the Maggie`s Centre Manchester and is supported by Orchid. This group meets on the first Monday of every month between 2.30-4.30. For further information please email email@example.com (phone 0808 802 0010) or Maggies Centre Manager Sinead Collins Sinead.Collins@maggiescentres.org (phone 0161 641 4853).
The Clinical Nurse Specialists at Southmead Hospital will be running information sessions in 2020. If you are interested in attending both or either of these sessions or would just like to talk to a Clinical Nurse Specialist then please call Cate Abbey on 0117 41 40512 or email her on firstname.lastname@example.org
This group is the largest online group Orchid are aware of. Men and their partners who have been affected by penile cancer post questions and answers on a regular basis. It is a closed group (requires a Facebook login and membership request).
Check Your Tackle (An Australian Charity)
For information on how to manage urinary and sexual symptoms please click here
For information on how to manage lymphodoema please click here
To read personal stories of men who have been affected and treated for penile cancer please click here
Orchid are also working with European orginisations to improve the treatment and support of men affected by penile cancer.
Last reviewed November 2019. Next review November 2020.
References available on request.