GIVING MYSELF THE BEST CHANCE
I ’ve always been an anxious person, particularly around health, so I knew I would have to get tested for BRCA1 or live with anxiety around it for the rest of my life. I’m one of five sisters and we decided to get the test after my eldest sister Jade was diagnosed with metastatic breast cancer. She carried the BRCA1 gene mutation. Turns out three of us carry it. Jade, my sister Carly, and me. When I found out I was a carrier, a month after Jade died, I was terrified. It’s been scary for my whole family, and hard on my sisters who don’t have the gene because I think they feel an element of guilt. Carly and I had to have tests every six months: an MRI at the six-month mark and then an ultrasound and/ or mammogram at the 12-month mark. She was diagnosed with ductal cell carcinoma in situ (DCIS) in 2020, and then stage three triple negative breast cancer two years later. Thankfully, she is now fully recovered. After months of watching Carly going through her treatment, and dealing with my own anxiety, I decided to go ahead with a preventative mastectomy and reconstruction. It was planned for July 2024 but brought forward after one of my follow-up MRIs revealed I too had DCIS. I had a lumpectomy, but a biopsy showed one of my lymph nodes had triple negative breast cancer cells. I commenced an urgent round of IVF for fertility preservation and had two back-to-back IVF rounds. It was rough. I have always wanted to be a mum, but after seeing my sister die and knowing I carry the mutation, I have now changed my mind.
I finished chemo in December 2023 and have just had a double mastectomy and reconstruction. I will continue to see my oncologist every three months and have an ultrasound every six months. I can’t get over this fear of it coming back, even though I know my risk is now lower than a woman who doesn’t have the BRCA mutation. I am now seeing a counsellor and have been referred to a psychiatrist. I also talk to my oncologist and my breast care nurse because they’re the ones I trust. I had a mental hurdle I had to cross before I decided to have preventative surgery. Unluckily for me, cancer beat me to the punch. If you have a history of breast cancer in your family, please consider being tested for gene mutations. Regular testing means early detection and early detection is vital for survival. Cancer does not discriminate. Cancer does not wait for you to be ready. Visit our Online Network to connect with others or visit our Information and Resources Hub for information relating to the fear of recurrence
Amanda and her sister Carly, discovered they were both carriers of the BRCA1 gene.
WHAT IS DCIS? Ductal carcinoma in situ (DCIS) is the most common type of non-invasive breast cancer. DCIS is the name for abnormal changes in cells in the milk ducts of the breast. It is non- invasive because it hasn’t spread into any surrounding breast tissue. DCIS isn’t life threatening but can increase the risk of developing invasive breast cancer later in life.
MY STORY Would you like to share your story? Everyone in the BCNA community has their own story to tell; of their experiences, the highs, the lows and everything in between. If you would like an opportunity to share your story, it could be on social media, in the next Beacon, on the website or even speaking in person to fundraising groups or local community activities please click here and we will be in contact. We would love to hear from you .
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bcna.org.au
Issue 97 | April 2024
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