My name is Peta and this is my story.
My journey began back in the year 2000, back when the world was concerned about being consumed by the millennium bug, my world was soon to be consumed by cancer. On Australia Day, 26th January 2000, my Mum rang to say she had been diagnosed with breast cancer, aged 53. My mum was one of six siblings (five sisters and a brother). This news was a complete shock. She had had no obvious symptoms, no lumps that could be felt; no dimpling of the nipple or the skin…the only indication that something was wrong was a constant ache in her arm. I was expecting a diagnosis of repetitive strain injury or muscle fatigue. This was the beginning of an eight year gruelling battle against a cruel disease that….
Mum was admitted to hospital, underwent a mastectomy and began an intensive course of chemotherapy and radiotherapy. In response to Mum’s diagnosis, her sister’s dutifully went to have mammograms. It was only a month later that her youngest sister, aged 41, was also diagnosed with breast cancer – ductal carcinoma in situ.
Over the following eight years, each and every one of my aunts (my mum’s sisters) was diagnosed with breast cancer. Five sisters from one family. It became screamingly obvious that there was a genetic cause to this cancer. My family approached KConfab and were tested for the BRAC1 and BRAC2 gene mutations. Surprisingly we tested negative for both of these known cancer causing gene mutations. The geneticists were able to theorise that although we were BRCA1 and 2 negative, there was undoubtedly a genetic link, a mutation somewhere, but at this point in time, it could not be located. We were still considered to be at high risk of developing breast cancer in the future.
I began seeing a breast surgeon in 2000, who would oversee my care and organised regular screening, mammograms, ultrasounds and MRIs.
In 2005, Mum began to deteriorate. The cancer had spread to the carotid artery in her throat. The tumour could not be removed. We were told it was now a case of maintaining the tumour and keeping it under control with more chemotherapy and radiation. This became the endless cycle for my mum. Chemo and radio = finish course = tumour would grow = more chemo and more radio, etc.
By 2008, mum was tired. Physically ravaged, mentally worn down. When she was told that three new tumours had appeared in her brain, she chose to stop all treatment. And on August 9 2008, my mum died at home, with her three children, her sister and grandson by her side.
My aunts all continue to fight this disease, so far successfully – helped by early diagnosis and aggressive treatment.
After Mum’s death, I began to research preventative measures. Things I could do to avoid having to travel the same path as my mum and her sisters. Working closely with my breast surgeon and geneticist, I considered all my options: the wait and see option; close and careful monitoring; oral tamoxifen (oral chemotherapy as a preventative) and prophylactic surgery. My decision was years in the making – but at the beginning of 2012, I decided the time was right to go ahead and have a prophylactic (preventative) double mastectomy and DIEP flap reconstruction. I had always assumed that my private surgeon, whom I had being seeing for 12 years would be the one to do the surgery and that she would recommend a plastic surgeon to do the reconstruction. But when I received a quote for out of pocket expenses that exceeded $20,000, I had to think again. $20,000 was no small sum; it was not money that I simply had lying around. Yes, I could redraw the amount from my home loan, but putting my family in a situation of financial strain was not something I would do lightly. I began to research other options, different types of reconstruction (implants would be cheaper than the DIEP flap reconstruction), the public hospital system etc. I went back to my private breast surgeon and spoke openly with her about the costs and asked her to refer me to a public surgeon, so I could get a second option. She happily did this and with her support, I met with a team of surgeons from the public system six weeks later. Two weeks later I signed the consent forms to proceed with the surgery in the public system. I was classified as a category 2 (semi urgent – surgery desirable within 90 days). And so the wait began. The 90 day time frame came and went and I was fearful of becoming stuck in an inadequate, overloaded system….destined to wait years for my surgery. After five months of waiting, I received my surgery date and I had my double mastectomy and DIEP flap reconstruction in October 2012.
My experience with the public medical system has actually renewed my faith in our public hospitals and their processes.
I am now three months post surgery and have absolutely no regrets. The surgery was big, huge!!! And the recovery was tough but the peace of mind that comes with it, makes it completely worth it. I feel like I have defied the odds and given myself and my family a gift – a future without breast cancer.