It was over 20 years ago when I wrote to the Alzheimers Society. I was caring for my partner David, who was severely ill with the condition, and I felt I needed to call attention to the fact that all of the Society’s publicity materials and stories seemed to assume the presence of a caring husband or wife and a supportive family as they went through this most terrible of all conditions. I wanted to say that there were carers and those with dementia out there, single, not in a family situation, and perhaps gay too.
Last year I was diagnosed with cancer – not prostate, as you might understandably assume, but breast cancer. And I have to say that over the last 18 months I have had a fair share of déjà vu experiences, not unlike the ones I had with the Alzheimers Society all those years ago. It was then and remains a matter of inclusion and equality.
On average annually there are 350 men who are diagnosed with the condition and that means, over a 5 year period, 1750 of us are likely to be surviving and coping with the effects of our treatment. I will not allow that this is a small number and of people of little consequence.
So how has it been for me? I have to admit that my initial experience of coping with the disease was positive. I was given helpful booklets targeted at men and my care was probably no different from all those thousands of women who share the same condition. I have met a lot of empathic people who did their best to support me and I am grateful.
However, in the cold light of day, I have gradually started to feel less positive about my care and more dissatisfied with how things are going.
Eighteen months ago the mantra ‘men get it too’ was sufficient to make me feel included and wanted but I have now started to ask questions about my breast cancer care. For example, why are the images related to breast cancer usually feminine ones? It doesn’t hurt to show the occasionally man; it can’t involve extra cost and if it succeeds in encouraging men to identify with the condition then that can’t fail but make us feel good; it might also encourage men, especially those with a family history of the disease to regularly check themselves for lumps.
Then again language matters and its right use can provide a feeling of inclusion. I still see phrases like ‘women with breast cancer’ when ‘people with breast cancer’or ‘women and men with breast cancer’ are fairer alternatives. If organisations and charities are able to say ‘men get it too’ then they should take an extra step by giving the simplest but also strongest impression that us men are included and are an equal part of the system.
Then let us recognise that 350 men per annum all have stories and these need to be told and be heard and should be a regular feature of all materials which charities and support organisations publish. I already know that the response will be ‘if only we could get them to do it’ but the lack of such stories will continue if the approach is simply reactive and not proactive. If we males with the condition are not good at communicating our needs then organisations need to be more proactive to help us to do so. We are equals and need to be seen to be so.
I am a fortunate man. I have a loving partner who provides the best support I could wish for and we are not afraid to talk about having cancer! I cannot tell you how liberating that experience is, and I hasten to believe that most other men might find it so. But there is also huge value in sharing with others with the same condition. When dealing with such a relatively small number, achieving person- to-person contact is not easy, though groups in the USA and Australia exist based on websites and social media. So far such contact has not been achieved in the UK and it has been suggested to me that age, non-use of the internet, and ‘embarrassment’ to talk about the condition, might impede the formation of support groups. This places the ball firmly in the court of charities and health providers who have the contacts with BC men and could be proactive in forming such groups.
Finally, and perhaps more importantly there is the issue of our treatment. I am starting to ask some fundamental questions and am discovering that fundamental answers are not always available. For example: Is female breast cancer congruent with male breast cancer? Do we have the evidence that the available medication has the same effectiveness for men and women? Do we really know why so few men succumb to the disease? And there are other questions too.
It is not encouraging for us men to be told that finding answers has to take into consideration the fact that there are so few of us and research money is short.
So it is an interesting world where we men are calling for more focus; where we men have to yell to be included; and where we die sooner than women because we are not women. It is a fact that our later diagnosis means our prognosis is worse.
On October 20th my partner and I, in common with many men all over the world, will be saying ‘think of us and support us too’ and we will be proudly wearing our t shirts which proclaim ‘Breast Cancer. Men get it too’.