Most of you reading this latest post have followed my journey to date. You know about Lachie’s battle with cancer and are familiar with the unexpected and sudden passing of Chris to Melanoma nearly one year ago. What isn’t so widely known is my own diagnosis with BRCA1. Everyone has BRCA1 and BRCA2 genes. The function of the BRCA genes is to repair cell damage and keep breast cells growing normally. But when these genes contain abnormalities or mutations that are passed from generation to generation, the genes dont function normally and breast cancer risk increases. Translated in some sobering statistics, the average woman in the UK has a 12.5% chance of developing breast cancer at some point in her life. A female BRCA1 carrier has between a 60 and 90% chance of developing breast cancer. They also have an around 40 – 60 per cent chance of ovarian cancer. In 2011 my mum tested positive for BRCA1. At the time the BRCA mutation was not commonly known. It would gain significant attention in 2013 when Angelina Jolie wrote about her own experience with BRCA and her decision to undergo surgery. Mum’s unexpected diagnosis opened the door for my sister and I to be tested. We both carried a 50/50 chance of inheriting. I was vaguely aware of BRCA having watched a documentary on it some years earlier but never suspected it would come knocking at my door. I chose to undertake the test; two simple blood test which would be sent to Australia for testing. A process that would take around three months. I wasn’t to know that during that small window of time my world would come crashing in around me. In early January 2012 Lachie was diagnosed with cancer. I recall being aware at the time of Lachie’s diagnosis that my own result were due back at any stage and I knew that I was in no head space to be dealing with the implications of a positive diagnosis. A call was made to the Genetics Health Service team requesting that communication with me be put on hold indefinitely; I would contact them when I was ready. I resided in this place of ignorance for about six weeks before coming to the realisation that ignorance wouldn’t save me from cancer. On February 14th 2012 I left Chris in charge of Lachie (we were in hospital for chemo) and I wandered downstairs to where Genetic Health Services were located and requested my results. I was positive for BRCA1. What I had thought would be a devastating diagnosis was not the case. I suspect that in light of the enormity of the situation we faced with Lachie, the news that I ‘might’ develop breast or ovarian cancer at some stage in my life wasn’t nearly as daunting as the reality that my 4 year old son DID have cancer. The situation cast an amazing clarity and balancing perspective upon the diagnosis. At that point I decided to embark upon a vigilant monitoring programme involving mammograms, ultrasounds and MRI scans, with the intention of detecting breast cancer at the earliest possible stage. Given the other commitments at the time, this was our best option. My first mammogram showed abnormalities and I was called back for further testing. It was to be my first insight into what a lifetime of high surveillance monitoring would entail and I quickly came to the realisation that this wasn’t that option for me. I felt like an unwilling participant in a game of Russian Roulette. Chris and I talked through the options at length, spoke with numerous experts and I made the decision to proceed with a preventative bilateral mastectomy and reconstruction as soon as our commitments allowed. As 2013 got underway, it looked like the middle of the year would be the right time. Lachie would be at the end of treatment and would be at school full time. Life would be returning to normal. I was booked in for surgery on June 11th. Once again life intervened. In the lead up to my surgery, Chris was diagnosed with melanoma and my mum with breast cancer. My June 11th appointment was pulled and given to my mum who underwent her own bilateral mastectomy and reconstruction. Things spiralled from here. Chris would soon be diagnosed with terminal cancer and the year that followed his death would be a time of grieving and healing. A time to piece our lives back together again in a way that would allow us to function and move forward. As the cloud that we were living under began to lift, my own health came to the fore again and I realised it was time to confront the threat that BRCA1 posed, and to find a way to tip the odds back in my favour. And so last Tuesday I underwent a Preventative Bilateral Mastectomy and reconstruction. Both breast were removed and reconstructed and in doing so I reduced my lifetime risk of breast cancer by 95%. I’ve written openly and with honesty about my experiences with cancer to date and the support I have received in return has given me strength and encouragement in abundance. I was slightly more hesitant to chronicle this latest chapter. In a way I was experiencing my own degree of emotional fatigue and couldn’t help but think that everyone else would be feeling the same. And then it dawned on me in the days that followed my surgery that this was a positive and uplifting (in more than one way!) experience. It was in so many ways the antithesis of what had gone before. In the past three years, I’ve had very little choice in the events that have occurred around me. This time I did. This was no easy journey. One does not make the decision to remove your breasts lightly and without thought, research and a significant amount of consideration. But on the same hand, you don’t witness the ravages of chemotherapy, radiation and the loss of a loved one to cancer, without it providing a sobering insight into the realities of this disease and a very clear understanding as to the true nature of the enemy you are facing. This past week has brought with it the full spectrum of emotions and feelings. I have moved from fear and anxiety. Pain and discomfort. Helplessness and anger. Humour and positivity. Support and love. But most of all, there has been relief. As the cloud of haze that has enveloped me (courtesy of some strong medication!) has begun to subside and I am once again able to focus, think and string some articulate words together, my interest in writing has resumed. I’ve read a lot of posts from people who are completing the Gratitude Challenge. I’ve also noticed that everyone’s been too scared to nominate me! Here are my three for the day. 1. I am grateful for the discovery of the BRCA1 gene in 1994. 2. I am grateful to the distant family members in Australia (whom I’ve never met) who tested positive for BRCA1 and then contacted my mum with this information. Without this contact, we would have never known we were at risk. 3. I am grateful for a medical system which has provided me with the information to understand this gene, the emotional support to allow me to accept the diagnosis, and the medical options available to give me the choice as to how I want to manage my risk. “There is some good in this world, and its worth fighting for.” ― J.R.R. Tolkien
Posted on: Sun, 27 Jul 2014 21:52:14 +0000
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