“You are too young to have breast cancer.” These words were spoken to me by my OB-GYN three days before my life as I knew it came to a crashing halt. Three days before I had the thought that my children will not remember me. Three days before I thought my husband would be a single dad. Three days before I thought my story would be like my mother’s. Three days before I literally fell to the floor upon hearing the words: the tumor is breast cancer.
I first felt the lump when my daughter was 2 weeks old and it was dismissed by my doctor. He said surely this was a clogged milk duct. Although I knew young women can and do get breast cancer, I found comfort in my OB-GYN’s words that I was too young. Four months later that “clogged duct” was still there — and due to its size, I went for testing.
As a woman with a family history of breast cancer, I always thought I would get the disease that killed my mother. I just thought I had a lot more time. My daughter was only 4 months old. My son was only two and a half. I was only 32. How could I have breast cancer? I should have known better.
Breast cancer first entered my life at the age of 16. One day I came home from school and my father told me my mother was having a procedure to remove breast cancer. My mother had surgery, chemotherapy, and radiation for three years with no evidence of disease. Four years following her initial diagnosis, my mother got diagnosed with metastatic breast cancer. Six months later, my mother lost her battle to this terrible disease.
Twelve years after that awful day, I got diagnosed, and after 3 more years and 1 day later, my younger sister got the word she had invasive triple negative breast cancer at age 31. Breast cancer is not a pretty pink ribbon. It is loss, harsh treatments, and a battle for our lives.
I am now almost five years out from my cancer diagnosis. I have learned that my story is mine alone; it will not be the same as my mom’s story. I have embraced my cancer journey and all that has come with it.
The World Health Organization reports that in 2010, there were more than 1.6 million cases of breast cancer worldwide, making it the top cancer for women in the developed and developing world. Although BRCA mutations are a just a small portion of these cases, this gene mutation is what took my mother, affected my sister and me, and may ultimately threaten my daughter and son’s lives. When at the end of chemotherapy, I underwent gene testing, I learned not only did I carry the BRCA mutation. The reality then struck me that my children have a 50% chance of inheriting the gene, putting them at high risk for breast, ovarian, prostate, and pancreatic cancer.
The knowledge that I am a carrier of the BRCA mutation has helped us to stay one step ahead of cancer. A year following my diagnosis, I had my ovaries removed to eliminate the risk of ovarian cancer. My sister was able to catch her breast cancer at an earlier stage due to her MRI screenings. I believe firmly that if my mother had that knowledge, treatment would have been more aggressive and she would have won her battle with breast cancer before it became metastatic.
I had heard about the genetic test in my twenties, but I did not know that if I tested positive I could have up to an 85% risk of developing the disease and a 40% risk of developing ovarian cancer. I did not know that I could have had a prophylactic mastectomy that would lower my lifetime breast cancer risk to less than the U.S. national average, which is currently 12%.
I am now the Raleigh-area FORCE outreach co-coordinator and we are a resource for women in the Triangle area who have a strong family history of breast cancer and ovarian cancer, or who have tested positive for the BRCA mutation. There is also a FORCE Charlotte group. We have support group meetings and work with local genetic counselors. I am very glad I can help bring support and education to families affected by hereditary breast cancer. We need to be our biggest health care advocates — and doctors need to get the word out on genetic testing and how it can save lives.
I am also a North Carolina state leader for Young Survival Coalition, an organization that provides support to young women coping with breast cancer. In this role, I help spread awareness that young women can and do get breast cancer. We have monthly support and networking meetings at UNC Lineberger Cancer Center and various other events throughout the year.
Not all cases of breast cancer for young survivors are genetic. It is important to not dismiss warning signs even if there is no family history of breast cancer. It is estimated that over 13,100 cases of breast cancer will occur in women under age 40.
Pink-tober is in full swing and everywhere we turn there will be a sea of pink ribbons, walks, NFL cleats and a lot of businesses promising to donate to the cause. I hope that we can ignore the commercialism and focus on the real purpose of this month. Early detection saves lives! If you have a family history, please speak with a local genetic counselor. If you notice a lump, or any changes in your breasts, get it checked out and don’t allow your concerns to be dismissed by your doctors. Too many of our mothers, sisters, aunts, cousins, and daughters are losing their battle to this terrible disease. Until there is a cure, we need to focus on education, surveillance, and early detection.