IS POWER Knowledge
W hen my sister Amber was we didn’t know we had a family history of the disease. It wasn’t until her cancer returned in 2017, this time as metastatic breast cancer, that tests confirmed she carried the BRCA2 gene mutation. diagnosed at 34 with Stage 3 breast cancer in 2012, It turned out the gene had been passed down from my Dad’s side, but we didn’t know about the medical history of his large, estranged family. After a simple blood test, I found out I also have the BRCA2 gene mutation. At the time, I had an eight-month-old daughter and had just watched my sister go through treatment for metastatic breast cancer. Knowing I had the gene too added another layer of fear. I met with a genetic counsellor and had various appointments to assess my risk. After analysing the information, they told me I had a 2% increased chance of getting breast cancer. I understood that this would increase as I got older. As a final step, I had routine tests— a mammogram, ultrasound and MRI. During the MRI, they found eight centimetres of ductal carcinoma in my left breast. Suddenly, I had to make big life- changing decisions before I even knew how far the cancer had spread. There were a lot of questions and a lot of unknowns. It was a very tricky path to navigate. I would need to have IVF if I wanted another child. So, in just three days, I had to decide what type of surgery I wanted—a lumpectomy, a
single mastectomy or a double— as well as make decisions about my fertility. I decided I wanted to do as much as I could to increase my chance of living a long life with my daughter, so I chose to have a double mastectomy and no fertility treatment. I was very lucky that the cancer was contained mostly in my milk duct. If I had just kept having mammograms every two years, I would probably not be in a good position today. Some people in my own family and others who have a family history of breast cancer have chosen not to have genetic testing. I understand where they’re coming from, but I have a different perspective. I’ve lost my sister to it and now my Dad has recently been diagnosed with breast and thyroid cancer. When my daughter is 18, she’ll be able to have genetic testing. Hopefully, research and preventative surgeries will have improved by then, and there’ll be more awareness and screening for genetic mutations. Now, I actively participate in studies and focus groups through the Peter MacCallum Cancer Centre in Melbourne. For me, knowledge is power. I hope my story helps to raise awareness of genetic testing so that people can be more empowered. I feel like I can carry on being healthy and not live in fear every day. This September will mark the fourth anniversary since my sister Amber died from metastatic breast cancer. Everything l do in this area is to honour her memory and her wonderful life.
Award winning self-portrait photograph of Holly Clinton with her father with their matching mastectomy scars.
WHAT ARE BRCA1 AND BRCA2? The BRCA1 and BRCA2 genes (BRCA stands for BReast CAncer) usually protect us from developing breast cancer. However, inheriting a pathogenic variant (gene mutation) in one of these genes increases the risk of developing cancer. They are the most commonly inherited gene mutations. However, if one family member has a genetic mutation linked to breast cancer it does not mean that all family members will have it. CONCERNED ABOUT YOUR RISK? It’s important to know that only 5–10 percent of breast cancers are due to a genetic mutation. If you are concerned about your risk, talk to your GP or breast cancer specialist. You may be referred to a family cancer clinic. There is no charge for a consultation and genetic testing is free for people who meet certain criteria. To find out more about genetics and risk of breast cancer visit our website.
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April 2024 | Issue 97
Breast Cancer Network Australia
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