On my first date with my future husband, Dave and I talked about breast cancer as we walked along the Providence River. While the river walk was romantic, the conversation was far from it. I told him that two years earlier I had learned that I carried a mutation in my BRCA2 gene, which meant I had an 87% chance of developing breast cancer in my lifetime. Considering the streak of women and men in my father's family who'd already been affected by cancer, my odds were not good; I knew I'd be having a mastectomy pretty soon to lower my risk.
Dave told me about his sister's and his mother's breast cancer experiences and his sister's diagnosis when she was only 30 years old. His grandmother had died in her 50s from breast cancer. In the first year that we were dating, I talked a lot with his mother about BRCA and genetic testing, and eventually he, his sister, his mother, and his uncle all had the test and discovered that they were positive for the BRCA1 mutation.
This week is National Hereditary Breast and Ovarian Cancer Week, with Previvor Day on September 28th. During the week we try to raise awareness for those with hereditary cancers and predispositions to cancer – those who may not have been diagnosed with cancer yet, but who are at very high risk – and the efforts that organizations like FORCE make to support families with mutations that mark their risk and can, without support, pervade their lives.
My family is one such family, as is my husband's, so this week is particularly important to us.
Days after our wedding, we learned that Dave's mother's first cousin had breast cancer; she found out about FORCE from the donation cards we left at the place settings at our reception. She was tested and learned that she too is BRCA1 positive. A year later she was diagnosed with fallopian cancer. She has been cancer free for more than five years.
Three months after our wedding in 2009, we learned that my father's brother was dying from pancreatic cancer related to the BRCA2 mutation that our family carries; he died only a week or so later. His daughter, my first cousin, was diagnosed with breast cancer about a year later, when she was only 28 years old. She, too, is BRCA2 positive. She went through chemotherapy and surgery, and has been cancer free since then.
I was diagnosed with DCIS in the end of 2012. In the summer of 2013, while I was recovering from my hysterectomy, Dave's mom was diagnosed with breast cancer for the second time. She went through chemotherapy and had a mastectomy with reconstruction. She passed away less than two years later from a third recurrence of breast cancer at the age of 69. She underwent a lumpectomy and radiation after the first diagnosis and a bilateral mastectomy and chemotherapy after the second, but none of that kept the cancer from returning and finally attacking her spine, bones, and liver. Her cancer was aggressive because of the BRCA1 mutation.
Dave's mother's funeral was hard for us in more than the typical ways. Yes, he grieved for his mother; I grieved for my mother-in-law. We held each other's hands hard, neither wanting to say out loud what we feared the most – that it could be me one day. It could be his sister, his cousin, one of my cousins, my father. It could be Dave, it could be our son, it could be any of us dying too early because of the mutation.
Cancer pervades our genes, but we don't let it pervade our lives. We do what we can by supporting FORCE, raising awareness by celebrating HBOC week and participating in local programs where we can talk to others about genetic testing, telling our story to anyone who will listen. We keep up with medical appointments and screenings, and we encourage our family members to do the same.
Being BRCA positive doesn't mean our marriage can't be positive. Our family is full of previvors and survivors, and because we are empowered by the information we have from genetic testing and we know what any of us could face at any time, we are all prepared to support each other. And we're stronger for it.
This HBOC week, please spread the word about FORCE and genetic testing.
Bryna Siegel Finer tested positive for the BRCA2 mutation at 26 years old and, after seven years of screenings, a mammogram discovered DCIS in her right breast. Bryna teaches writing at Indiana University of Pennsylvania and lives in Pittsburgh with her husband, who is BRCA1 positive, and their son. She is a peer support group co-leader for FORCE Pittsburgh and can be reached at email@example.com.
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