Hayley's Story: 'When my mother passed away from breast cancer, I decided it was time to find out my own health risks'

12 Jun 2023

Hayley Clarke was 34 when she was told she had the BRCA2 gene. This meant that she is at a higher risk of developing breast and ovarian cancer.

“When my mother passed away from metastatic breast cancer in 2012, I decided it was time to find out my own health risks. I visited genetic counsellors in Bendigo and discussed the health history of my family tree with them. I was told that as my mother’s type of breast cancer was not genetic then testing was not a priority. Although I had a gut instinct telling me to push the issue, I let it go for a while.

“Then in 2016 I received a letter from Lifepool, part of The Peter MacCallum Cancer Centre, asking me to take part in a genetic research project. I am unsure how I made it onto their mailing list – I must have ticked a box at some stage to give them permission to contact me. They requested a blood sample which was to be used for research into genetic mutations.

Initially I put it on my never-ending list of things to do. Then, about 18 months after receiving the request, I took the pathology slip and had a blood test.

“It was December, around six to nine months later, when I received a letter from Lifepool, inviting me to call them to discuss my results. When I called, the man on the other end of the phone asked me if I had ever heard of the BRCA gene mutation. When I told him that I had pushed for my own testing, he gave me the news. I was positive for the BRCA2 genetic mutation. I was in shock. My gut feeling had been right all along.

“Everything kicked up a gear. I had an appointment with the genetics team at the Austin Hospital in Melbourne, where they went over my results and what this meant for my future health. They were very thorough and clear about my options: I could keep having mammograms and ultrasounds of my breasts to watch for abnormalities or I could investigate preventative surgery.

“Watching my beautiful mum pass away from this horrible disease at such a young age made the decision easy for me. My family was complete, and I did not want my children or my husband, Julian, to have to go through what I did. Especially if there was a way I could prevent it. I decided to have preventative surgery to get the ticking time bombs off my chest.

“With the support and guidance from my surgeons, nurses, doctors, psychologists, breast care nurses, Julian, my family and close friends I was ready to have my double prophylactic mastectomy with reconstructive surgery. It was scheduled for Friday, 15th December 2017. My feelings were mixed and contradictory. I was scared and worried, but at the same time I knew it would be a huge relief. I had implants which will be reviewed in ten years for a possible replacement.

“Now, nearly six years on at the age of 40 years, I am about to undergo an oophorectomy to eliminate my chances of developing ovarian cancer. I continue to have an MRI every five years for continuing reviews following my mastectomy.

“My relationship with my body has changed. I have had to learn to love the breasts I have now, which was difficult for me - my previous breasts were such a sexual part of my intimacy with my husband. I now have very limited sensations.

“This journey has been hard and long. Thankfully, I have had the support of my family, some of whom are also BRCA2 gene positive. The Pink Hope Community has also allowed me to network amongst other members in a similar situation. My community has encouraged me and given me the strength to advocate for myself, as well as the amazing people whom I have sadly lost along the way. These people were also BRCA2 positive and gained their angel wings, so I am their voice now.

“The biggest lesson I have learnt is that each choice a person with the BRCA2 gene mutation makes is an individual one. Just because it was easy for me to make the decision for preventative surgeries does not mean it is as easy for other family members. I have also had to learn not to blame myself for the possibility of my children inheriting the BRCA2 gene.

When the time comes for them to be tested, I will support and guide them as much as they need.”