05/07/2013 11:26 am ET Updated Dec 06, 2017

My Mother's Gift of Knowledge

Lindsay Avner

For previous generations of my family, Mother's Day was met with mixed emotions -- with fear and concern about the unknown, yet almost predictable, future. A long family lineage of cancer created a dark cloud over the women of my family, and each holiday, birthday and anniversary was met with trepidation rather than celebration. Today, I can proudly say that I face Mother's Day with a bright outlook, thanks to the greatest gift of all: knowledge.

When my mom was only 18 years old, she lost her mother and grandmother (my grandmother and great-grandmother) to breast cancer at the ages of 39 and 58 years old, respectively. My mom found herself alone and confused. At a time when her friends were enjoying the carefree joys of being a college freshman, my mom was trying to understand her new normal as a motherless daughter.

When I was 12 years old, my mom was first diagnosed with breast cancer and then 10 months later, with ovarian cancer. After almost three years of surgeries, doctors' visits and grueling chemotherapy sessions, she was pronounced cancer free. I found my 13-year-old-self asking, what happens when it's my turn, when I develop cancer? My mom would reassure me not to worry, that we would have a cure by the time I was older and I would not need to deal with this.

Needless to say, I grew up very quickly. Before we knew it, I was graduating from the University of Michigan. I returned home that summer in 2005 to learn that my mom had chosen to undergo genetic testing. A simple blood test had revealed that she carried the BRCA1 gene mutation, which explained not only our family's bleak cancer history, but also the impetus for her breast and ovarian cancer diagnoses. My initial reaction was complete frustration and anger. The implications of these results were, at this point in our lives, less for her (she had undergone a double mastectomy and complete hysterectomy as a result of the cancers) and moreso for me. This discovery implied that I had a 50/50 chance of also inheriting this gene, which would give me up to an 87% lifetime risk of breast cancer and up to a 54% lifetime risk of ovarian cancer. My mother, approaching this information in hindsight, felt its power. Had they had the ability to discover such a mutation during her childhood, the knowledge could have meant her own mother would be alive today.

So, when it was my turn to be tested to determine if I were a carrier for this same genetic mutation, I felt myself thinking and hoping I would not take after my mother. Hadn't I experienced enough growing up with so much cancer in my family? I anticipated the relief I would feel to receive a negative result, what it would meant to know I wouldn't have to spend my 20's and 30's with the feeling that had haunted my mom, that cancer was imminent and it was only a matter of time before it struck. However, the test indicated otherwise. I, like generations of women before me, had inherited the gene fault and the extremely elevated cancer risk.

I cried for weeks and weeks, eventually landing myself in the emergency room when my colon started to spasm from stress. Who would want to marry someone like me? How was I supposed to pretend like life was normal when I knew cancer would show up at any time? Some experts say finding out that you carry the BRCA mutation can be just as devastating as finding out you have cancer. They may be right.

At first, I regretted ever walking down the path of risk assessment. I was single, starting a new job in a new city, and suddenly navigating what it means to live at high risk. I enrolled in an early detection program that included mammograms, ultrasounds, clinical exams and blood tests every six months. Though I was technically healthy, getting poked and prodded so often made me feel like something was already wrong, and that I was just waiting to get cancer instead of reducing my chances of developing it.

I had a choice. I could continue with surveillance or I could approach my significant cancer risk head on, on my own terms. Rather than wait to develop breast cancer, I had the opportunity to make a decision based upon data that my own mother and generations of women before me had not had the opportunity to make. In 2006, I decided to have surgery to remove my healthy breasts. At the time, I was the youngest person in the country to have the surgery.

I know to some it may seem strange, but I believe that the greatest gift my mom has ever given me has been the gift of knowledge. Sharing our family history with me, urging me down the difficult path of risk assessment and raising me to be strong and feel empowered enough to ultimately opt for the subsequent surgery has given me the chance to spend my 20's and 30's feeling proactive and not reactive, an advocate for my health not a victim of a disease. In offering the gift of knowledge, my mom provided me with the chance to save my own life, and now lead the charge to help thousands of other young women around the country save theirs.

In January 2007, I started Bright Pink to fill a void I discovered during my experience of risk assessment and developing a strategy to be proactive with my health. There was a lack of breast and ovarian cancer prevention and early detection resources specific to young women. Although it started as a website, today, Bright Pink has blossomed into the only national non-profit organization focusing on the prevention and early detection of breast and ovarian cancer in young women while providing support for high-risk individuals.

This Mother's Day, as we honor and celebrate our strong, beautiful, courageous mothers who made us the women, I urge you to ask your own mother to also give you this gift of knowledge. Gather your family's health history from both your mother (and father's) side and find out who had cancer, what kind, and at what age they were diagnosed. Take Bright Pink's innovative Assess Your Risk tool and use the summary print-out to guide the next conversation you have with your gynecologist or internist. Honor your mother and her legacy by being proactive with your own health. Let her own legacy and courageous spirit empower, strengthen, guide you toward a better, brighter future.