Treatment of breast cancer has come a long way in my lifetime. Fifty years ago, when I was four – it was 1966 and we were going to visit Nan.
Mum was very pregnant with my sister, and my brother and I were told to be very quiet as Nan was sick. She was dying of breast cancer, which she had been struggling with for about nine years. Mum told me Nan had ovarian cancer by the time she passed away as well and she was only in her 50s. In those days, treatment of breast cancer was very reactive (you had a lump, you took it out) and the survival rate was extremely low.
Fast forward to when mum was 40 – I was just 15. It was 1977 and she was diagnosed with an invasive breast cancer & given three months to live. She had the left breast and lymph nodes removed and chemotherapy started straight away. A year later, she was diagnosed with ovarian cancer. I remember she looked like she was nine months pregnant and in so much pain. Two decades after that, in 1994, she got cancer in her second breast; it was diagnosed early as mammography had just started.
My sister and best friend, who I have been through life with – and all its ups and downs – joined KConfab – a study into familial cancers, along with myself, my brother and mother 17 years ago. This opened up conversations with my sister periodically about being at risk of breast cancer, what it meant to us and how we were going to manage it. For a period of time, we both had regular mammograms, ultrasounds & pelvic ultrasounds.
As our children became adults, we both agreed it was time to get our heads out of the sand and get a genetic test done. We were both comfortable with how treatment options had progressed and the worst-case scenario for surgery. My sister and I arranged to have our genetic tests done through the familial cancer unit – mine at Westmead and my sister Ali at the John Hunter Hospital as she lives on the Central Coast.
As usual, life got in the way – Ali got her test before me and thank goodness, she was negative. So it was around November 2015 that I first spoke to Prof Judy Kirk and arranged an appointment for February 2016. At the time of the call, I said: ‘by the way, I am due for my annual mammogram.’ She said: ‘yes have it done and I will see you in February.’ I lined all the appointments up and on December 7, I had my free mammogram. I thought nothing more about it – Christmas was lovely that year!
The first day back after New Year, I received a call from Westmead BCI and was asked to come in the next day for a follow-up mammogram, so off I went to my appointment on my own – big mistake!
I was the only one there on my own and I started to feel a little bit like a deer in the headlights. I ended up having an ultrasound and a biopsy by the end of the day.
A week later, I went back for my results and this time, I took my husband with me – smart decision! This is when I meet my surgeon and the nursing unit manager for the first time. He told me I had breast cancer. I remember standing up and saying I wanted it out yesterday; the tears came pretty fast then and tissues were being handed to me from all directions. I then told him about my family history, which changed the conversation completely.
My genetic test was brought forward and Prof Kirk urged me to hold off until I had all the facts to make an educated and well-informed decision on treatment options. After my blood test for genetic testing, the waiting game started. I remember sitting in Prof Kirk’s office, telling her I’d planned to hike Cradle Mountain to Lake St Clair in Tasmania. I’d wanted to do it since Graeme and I had taken the kids there 12 years earlier on a camping trip. She rang Dr Meybodi and they both decided that it would be a good idea that I go – in fact, they insisted!
My genetic results came back positive to a mutation in the gene BRCA1, which causes a high-risk of cancer in the family. This, and a diagnoses of breast cancer, collided spectacularly – I couldn’t believe they were talking about me! My bilateral mastectomy was scheduled for April 8, 2016. I was lucky it had been diagnosed early so I wouldn’t need chemotherapy or radiotherapy.
The night before my surgery I wrote: “every day, I put on my Wonder Woman cape. I live in the moment, I witness beautiful things, moments and people” – and weren’t there some amazing people around me! Little did I realise that what I was feeling at BCI was the supportive arms of the multidisciplinary team.
After five days in hospital, I came home with two Jackson-Pratt drains, which came out after a couple of weeks, and tissue expanders in both sides. Between that and my reconstruction surgery, I had my ovaries and fallopian tubes out as they were high-risk as well. This was done in day surgery on July 25. On August 23, I had my reconstruction surgery.
It is now six months on and I am so happy with the amazing outcome. Yes, cancer has changed my life – but for the better. My husband, son and daughter (both will need to be tested for the gene as they have a 50/50 chance of having it) have been my rock through all of this – I love you so much.
So much has changed in my generation/ lifetime alone in treatment options, early detection and understanding cancer types – we live in amazing times. Thank you so much to my BCI family, who I enjoy catching up with every time I’m there – I know you are extending the same care that was given to me to others.