BRCA1 cancer-risk gene prods local woman and daughters into pre-emptive mastectomies

Stephane Smith, right, poses with her mother Linda Futty, center, and sister Rebecca Brewer in this file photo.

Knowledge is power. 

How do we know? Because 2½ years ago we received some very terrifying but powerful information — information that changed our lives forever. We learned that our mother, a 25-year breast cancer survivor, has hereditary breast and ovarian cancer syndrome, or HBOC, caused by the BRCA1 gene mutation.


Read more: Complete coverage of Breast Cancer Awareness month


Having the BRCA1 or BRCA2 gene mutation increases your risk of breast cancer to as high as 87 percent and your ovarian cancer risk to up to 44 percent. Having either of these gene mutations also raises the risk of male breast cancer, pancreatic cancer, uterine cancer, melanoma, stomach cancer, colorectal cancer and prostate cancer.

With our mother’s diagnosis, we were faced with our own decision whether to be tested for the BRCA1 and BRCA2 gene mutations. For both of us, this was never really a question.

As children, we watched breast cancer wreak havoc on our mother after the removal of one breast and chemotherapy. We wanted to do everything within our power to prevent putting our own families through the same fearful, life-changing journey — a chance we know those who develop cancer are not afforded.

Two weeks after our mother found out she had the mutation, we, too, learned through a simple blood test that we carried the BRCA1 gene mutation. Boom! Life as we knew it would never be the same. That’s exactly what it feels like: Suddenly, life smacks you in the face with a cold, hard reality.

The silver lining in this new reality was that, thankfully, we weren't diagnosed with cancer and we had the power. Unlike many people we know and love who endured, or continue to endure, cancer, we could be proactive in an attempt to stay ahead of the cancer predisposition that haunts our bodies. We knew immediately what we were going to do. We felt powerful because both of us, along with our mother, elected to have preventive mastectomies that removed our breast tissue and complete hysterectomies that removed our uterus and ovaries. We remain under increased surveillance.

In 2013, from February to November, we staggered our surgeries in order to support each other and help care for each other’s children. Now, we are “previvors,” survivors with a predisposition to cancer who haven’t had the disease. That’s a term we learned while researching HBOC.

Getting to this point started several years ago. Each year, we encouraged our mother to undergo genetic testing. According to the published information, there’s a very small chance that you carry a BRCA1 or BRCA2 mutation if you or an immediate family member is the only person in your family with breast cancer. That was the case with our mother, so she wasn’t an obvious candidate to be tested.

The test is expensive and covered by insurance only under certain conditions. Thankfully, due to her young age at diagnosis — 41 — she qualified for testing. Because of our experience, we feel the recommendations to determine who should get genetic testing should be reconsidered to include any family history of cancer.

Once our mother was found to be positive, our insurance paid for our testing. But before that, because our mother was the sole person to have cancer in our family, our insurance would not have covered the cost. Had we not continued to encourage our mother to get tested, we could have potentially become two more cancer statistics.

Our choice was extreme, and it is not a decision that is right for everyone. There are other ways to mitigate risk, such as increased surveillance and preventive drug therapy.

The post-surgery journey is uncharted territory. Adjusting to our new bodies and mentally processing what we went through is an ongoing process.

Because everything happened so quickly, Stephane didn’t realize she needed time to process what was happening. Four months after her last surgery, she found herself struggling with the emotional weight of the new reality. She found comfort talking to a therapist, family and friends.

Rebecca found comfort attending HBOC support group meetings at Hershey Medical Center, where she talked with people who had similar experiences and made similar decisions. Our proactive decision is frequently reaffirmed when we hear of friends and family members being diagnosed with cancer, often at very young ages.

Knowledge is power, and we want everyone to have access to the same knowledge we have. Some believe the BRCA1 and BRCA2 gene mutations can only be passed from mother to child. But a father can carry and pass the gene as well, even if he was never diagnosed with cancer. FORCE, which stands for Facing Our Risk of Cancer Empowered (facingourrisk.org) is an organization that provides information and support and helps us greatly.

Our mother taught us to take charge of our health — that is a gift that is truly priceless — and we want to share that gift with you. Please educate yourself and know that you have the power to take control of your health.

Rebecca Brewer, of Manor Township, and Stephane Smith, of East Lampeter Township, are the daughters of Linda Futty, of Mount Joy.