When and where did you first notice signs of your cancer? Was there something out of the ordinary that prompted you to check yourself/ see your GP?
I remember I had originally gone to my GP about four years ago now with what had looked like a boil or wart like growth near the end of my foreskin. My GP was a bit annoyed that I had not approached him sooner (the growth had been emerging for about two or three months). He immediately referred me to a Urology specialist and I was operated on quite quickly to have it removed. I was subsequently diagnosed as having the HPV (warts) virus, and also the skin condition lichens sclerosis near the tip of my penis. For about two years after that I attended an outpatients sexual health clinic. I recall being told by the specialist there originally that lichens sclerosis skin cells were not in themselves cancerous, but that they had the potential to become so. I was referred back to Urology for surgery to my foreskin (the skin specialist felt that a partial circumcision was required), and that operation and a biopsy took place in late July 2009. I later attended the hospital for the results of the biopsy, and was advised then that I had carcinoma of the penis.
Did you check yourself regularly or were you aware of the signs and symptoms of male cancer before you were diagnosed?
I had no real awareness at all of the signs and symptoms of penile cancer; although I remember now reading something years ago and thinking how awful that would be to have.
How did you feel when you were first diagnosed? Did your feelings change during your treatment?
I was completely stunned when I was told. As far as I was concerned, everybody else got cancer – not me. I was fit and healthy. Why should I get cancer? People don’t even know of penile cancer, it is so rare. I kept thinking of how this might end, although I knew that my inbuilt resilience would help me rationalise my circumstances. This proved to be the case as during treatment I felt that I got stronger and better able to cope as I came to terms with what was going on and got a better understanding of treatment and the way forward. The Consultant at the Beatson (Mr. Hendry) was a fantastic help in that regard.
Please give us a brief explanation of your treatment
Four operations within a six month period. Initially surgery; laser treatment; further plastic “reconstruction” surgery [subsequently disclosed to me as a partial penectomy] which involved a skin graft from my thigh; and finally sentinel lympth node surgery. The latter surgery was offered as a precautionary measure, and was a “no brainer” decision as far as I was concerned.
The only side effects I had were a “nick” in my uretha tract – which basically means that I drip, as well as pee when using the toilet; and a very small raised bit of skin at the base of my residual foreskin which sometimes can be an occasional discomfort during sexual intercourse. Follow up procedures involved regular attendance at the respective outpatients clinics (discharged from the plastic surgery clinic after one year ; discharge pending from the Urology cancer clinic).
Was there a particularly difficult or distressing part of your treatment or your cancer journey?
The initial awareness for me was the worst. I opted to disclose to my wife immediately, but could not disclose to other immediate family – at least until I knew that I had been treated OK. Like most things, the fear of not knowing what was going to happen to me was the worst.
The week after the plastic surgery was the worst part of the surgery journey – having to keep a compression bandage around my penis for a week was, well at best, uncomfortable. It was not sore, just a bit of an awful smell from the area despite my Armani treatment……… and when it was removed my reconstructed penis looked like a Terrys chocolate orange (OK a lot smaller, and not chocolatey of course, just a nice skin colour). I was meticulous about the post op after skin care. This helped a very rapid healing process. The skin graft site on my thigh is no longer discernible.
I was fortunate in that I had committed to my University place to continue my studies to become a person centred counsellor (the cancer diagnosis was received just before I was due to start the course). I gained great support in facing up to the psychological pain that for a guy, having cancer of the penis means.
What is the most important thing your family and friends did to support you?
Those to whom I disclosed gave me the best support possible by simply listening to me and encouraging me to do whatever I felt was right for me.
What were the high/ low points of the journey?
I felt low when I realised that it was going to take more than just one operation or treatment to “shake this off”. I also felt very low when I imagined that I might never be able to make love again. Fortunately my imagination at that point was inaccurate. I felt great when I was told that there was no evidence of the cancer spreading via my lymphatic system, after the sentinel lymph node surgery. I also felt wonderful when I “regained sexual functionality” and discovered that even with a reconstructed penis I could still give and receive pleasure. (The plastic surgeon had assured me that the nerves and sensations at the end of my penis would gradually return – he was right).
Do you believe the experience has changed you as a person? If so, in what way?
The experience has changed me significantly as a person. I am much better informed now about cancer and certain cancer treatments than ever before. I am also acutely aware of the general lack of talking therapy support for this type of cancer. The experience has also shown me how precious life is, and how the skill of surgeons and all of the Health Service staff is so important to us.
I also feel better equipped now as a qualified counsellor, to offer a more empathic understanding to the plight of those affected by cancer – not because of my own personal experience or journey, but because of my improved general awareness of how much it can mean to someone to be able to share their experience in confidence with an outsider, and not be judged. 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.
What medical or emotional support would you like to be offered in the future to support you after your treatment ends?
I personally feel strong enough emotionally to want to help others and I have felt like that for some time. Being on a counselling training journey has helped fuel that desire. I personally do not feel that I require one to one counselling but there may be something in my desire to share my experience that is essentially about me seeking some “therapeutic closure” or ending of my journey. Family and friends might (I think for some) find help groups useful.
What would be your message to other men affected by male cancer? What would be your message to their partners?
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…..
Any other comments
Writing this has brought back some memories for me of the difficulties which one faces in coming to terms with a cancer diagnosis and the reality of life. It has also reminded me of how relatively rare penile cancer is, yet that doesn’t mean that it should be paid less attention or be less deserving of support than say breast cancer. I have sat in hospital waiting rooms with all kinds of support leaflets for cancer conditions, but never saw any for penile cancer. I got most of my information from my Consultant because I was not afraid to ask him questions, and he was always happy to answer. I also used the internet for research but would say that you need to be careful and not get carried away with too much cyber information – particularly in the early days after the diagnosis.