BRCA and the Public Eye
Breast Cancer Awareness Month typically leads to a lot of ‘real-life stories’ being run in the media; both in print and on TV. This week I had the honour of meeting Michelle Heaton and two other ladies who have the BRCA2 gene. Michelle Heaton was being filmed for the TV show ‘Lorraine’ on her life with the BRCA2 gene. Like myself, she gets no personal gain out of sharing her story with the public but what she does is creates awareness of the gene, gets publicity and funding for charities and in return gets to chat with people she may otherwise have not have met. Part of the programme included Michelle talking to myself and two other ladies. We met at a tea shop and were filmed having a very informal yet informative chat about having BRCA, what it has meant to us and what we have decided to do about it.
As the conversation progressed there were several clear things that we all felt. We all felt privileged to know about the gene and to be able to do something about it. Of the two ladies that have already had a double mastectomy they felt relief and that they had definitely made the right decision. We felt sad and sometimes guilty that our children had a 50% chance of inheriting the gene but that again that it was better that we know and that we are choosing a better life for them and us by knowing and doing something about it. Some of us felt that occasionally our decisions were condemned and sometimes even by family members and friend who couldn’t understand why we would want to ‘mutilate’ our bodies.
As the programme aired on ITV’s Lorraine the response to Michelle was overwhelming and rightly so. This 33 year old girl, who is a very new mother, is facing the hardest decision of her life and is choosing to play it out in the public eye, which whilst some condemn, I find it truly admirable. By sitting on Lorraine’s sofa and telling her story she educates and inspires others who have the gene, want to know about the gene, and some who do not even know the gene existed (maybe my GP should have watched). Michelle found me and my story through Twitter and it is amazing to see some of the tweets that she receives. Women who are inspired to go for testing; to have their operations or women who now feel it ok to talk about the gene or breast cancer even though they have always held back before. Twitter can be a powerful thing but also a very cruel world. Following the show, whilst most messages were amazingly positive a few ‘twitter trolls’ crawled out of the woodwork; some just being downright rude and mean and others, some of whom were BRCA themselves, condemning her decisions, her thoughts, her appearance on TV and her general outlook on being BRCA.
BRCA still remains and always will be a personal journey. Sometimes it is a journey with a cancer diagnosis and at other times the fear of cancer, but the facts, at present, remain unalterable. There is an 85% risk of breast cancer and a 40% risk of ovarian cancer and it is each individual’s personal choice as to how they manage and address that risk. Surgery maybe the key for some and not for others but it has to remain everyone’s choice to make. The fact that Michelle is broadcasting her story should be celebrated as it helps others to see what being BRCA is about, what the choices are and how much of an emotional rollercoaster it can be. Going public does not mean that she is diluting the issues or sensationalising the reality. She is not going on TV and saying she has cancer and nor does she pretend to know what it would be like to live in the nightmare world of cancer. She is just simply telling her story and not for financial gain either.
One thing that rang true to all of us when we were filming the Lorraine show was that we were all headed on the same path of surgery. Two of the ladies had already had their operations, mine will be early next year and Michelle is considering all options but also appears to be heading in the direction of risk reducing surgery. There was an omission that there had difficulty in finding people who had opted for the screening route and had been doing that successfully for a number of years. Most had either had surgery eventually or in the other part had ended up with a cancer diagnosis. One tweet from a lady stated she had left it too late and that she now had terminal cancer. Many others reiterated this fact as ladies poured their heart out on twitter. This all contributed to reaffirming my decision. Whilst knowing about the gene and having surgery may appear radical. I whole heartedly believe I made the correct decision in choosing to know about my gene and choosing to opt for risk reducing surgery.
Everyone who has BRCA thinks and feels differently and that should be embraced and supported. The women like myself and the three ladies I met who put their stories out there in black and white do that not to tell others what to do and they are not saying that surgery is the only route. We merely present people with our story and experiences, hopefully to help them. The purpose is not to shock and scaremonger but to provide a down to earth and honest reactions and recollections of what we are facing in our lives. I hope my blog goes someway to helping other s in a similar situation.