By Temeika L. Fairley, PhD, CDC health scientist
I remember watching her pack a footlocker and suitcase for her first year of college. As I sat there on her purple crushed velvet bedspread, I wondered how long she would be gone. My Aunt Pat was the first woman in our family to go to college, so I didn’t exactly know how this was supposed to work. All I knew was that I would really miss her while she was gone and that I definitely wanted to go to this “college” place when I grew up.
Fast forward a few decades, Aunt Pat is a mom to two boys and a baby girl. I have made good on the “going to college” thing. My mom phoned to tell me Aunt Pat was in the hospital. She had surgery, but no one really knew why, and it just wasn’t proper to ask in a Southern family. We assumed that it was for something female since it was so hushed. Our family didn’t really talk openly about such things. By such things, I mean anything health related. My grandfather used to say, ‘Don’t go sharing your problems with everybody else’ or something Southern like that.
At some point later, I heard that Aunt Pat’s surgery was to remove some type of tumor. I assumed it was benign because no one spoke of it again. But over the next few years, she seemed to have had several other surgeries and been in and out of the hospital for treatment. Our family eventually learned that she had cancer, but no one knew the type. We tried to support Aunt Pat, in part by respecting her desire or need for privacy.
In 2014, we lost Aunt Pat to what we later learned was primary peritoneal (ovarian) cancer. She was only 57 years old.
I had suspected that she had a gynecologic cancer all along, but ovarian cancer had not really been on my radar. I mean black women don’t get ovarian cancer! At least that’s what I had been telling myself until I lost my aunt. I had been leading CDC work on breast cancer in young women since 2010. I had given talks about hereditary breast and ovarian cancer (HBOC)…risk factors, prevention, etc. Despite my expertise, I did not want to really deal with the idea of cancer in my family, especially not this type.
About 6 months after Aunt Pat’s death, her only daughter sent me a series of texts. They went something like this:
Cousin: “I got momma’s death certificate today. What is malignant peritoneum?”
Me (after a long sigh): “…It’s ovarian cancer.”
Cousin: “I didn’t know she had ovarian cancer. I thought it was colorectal cancer?”
I was stunned and saddened that she had to learn this information from a death certificate. But it was her next text that made me snap out of it:
Cousin: “I just googled it. Does this mean that I am going to get ovarian cancer too? Am I at high risk? What can I do about it?”
She was asking the questions that I had not wanted to think about, but that my family needed to think about. What did having a family history of ovarian cancer (and several other cancers) mean for our family? More specifically, am I at increased risk? Do I need to get genetic counseling and testing? Fear settled in immediately. I sat with this fear for a while and realized that it was one of the main reasons that our family talked so little about health stuff. We believed that if we didn’t speak the word cancer, then it did not exist…even though it already did. I have had to change my mindset with the hopes of influencing change in my family.
I knew from my work promoting breast cancer awareness in young women, that about 5% to 10% of breast and 10% to 15% of ovarian cancers are hereditary, meaning they run in families. About a year after Aunt Pat’s death, I started the process of collecting my family’s health history, specifically of breast, ovarian, and other cancers. I gathered all of the information that I could through conversations with family members and shared it with my doctor.
I’ve learned a lot about my family in this process as these health conversations have often turned into stories of our history, our tenacity, and characteristics that we all share. I know that Aunt Pat would be proud of us for having these tough conversations and learning more about ourselves. We all miss her, but her memory remains strong.
Talk to your doctor about your family health history. This will guide you and your doctor in deciding what tests you need, when to start, and how often to be tested. Learn more about family history and cancer.
This article was originally published on April 23, 2019, by the Centers for Disease Control and Prevention. It is republished with permission.