Written by Luan Lawrenson-Woods
My name is Amanda and I’m an Ashkenazi Jew. I found out that I was BRCA1 positive when I was 29, after I'd had my first child.
People ask me why I had genetic testing done in the first place. My grandmother, who was a Romanian Auschwitz survivor, had breast cancer twice. She lived to 84 and didn't die from breast cancer. When my grandmother was first diagnosed, my mum asked her GP whether she should get genetic testing, and he said to her “why would you want to know?”, so she didn’t get tested.
Thirteen years ago, I had an inkling that I should encourage my mother to get tested, and she tested positive for the BRCA1 gene when she was 60. When I went to get tested, I just knew I was going to be positive for the gene, so it wasn't a surprise to me.
From 29 until I was 38, I had regular screening, which was annual ultrasounds and mammograms. I chose to have a double prophylactic mastectomy when I was 38 with an immediate implant-based reconstruction. I’ve also had surgery to reduce my risk of ovarian cancer and I’m now in surgical menopause.
People say that it was a very brave decision. I think it's because I was very scared of getting cancer, and that I would do anything to prevent that happening.
I knew that having an Ashkenazi Jewish heritage meant that there was an increased genetic risk of cancer. I had IVF screening with my first child before I found out that I was BRCA1 positive. After that I wanted to become more informed. I went to a talk hosted by WIZO [https://wizonsw.org.au/about-wizo/], a Jewish women's organization, and Pink Hope founder, Krystal, spoke there. I also went to a conference in America to hear the stories of both Jewish and non-Jewish women who carried the BRCA gene.
There were a lot of brave women that shared their reconstruction results. I think that was instrumental in my decision-making. To see young, healthy women who had really positive reconstruction results made me feel very safe, knowing that I would still be beautiful and that it was worth doing it to become a grandma and live until an old age.
For me, sharing awareness is really, really important. There shouldn't be a stigma about discussing our increased genetic risk in the Ashkenazi Jewish community. Some will prefer to talk to women within our community, others might want to talk to someone outside of the community, like Pink Hope.
Getting tested isn't hard. Finding out you have the gene might be emotional, but knowledge is power, and it's important to find out so that you can do what you can to prevent cancer in your family.
It's not something to be afraid of. You don't have to have risk reduction surgery either. No one's going to force you to have a surgery. And people aren't going to force you to make any decisions. You can just get more screening to monitor your health.
Pink Hope can help. They have education resources available and can connect you with other women who have tested positive for a gene so that you can hear their stories about what decisions they’ve made.
I’ve had two more children since finding out I carry the gene, two girls, and we did pre-implantation genetic testing so that my girls don't have the BRCA gene, which is something that I feel very strongly about. I'm glad that my daughters won't have to face this genetic risk in their future, given that it's very, very common for Ashkenazi Jews to have this gene.
I share my story to help de-stigmatize the things people are scared to discuss, like IVF, genetic testing, risk-reducing mastectomy, and menopause, so that my friends know that we can have these conversations and there's nothing to be ashamed of – it's just part of life.