In 1996, at the age of 33, I was diagnosed with breast cancer. My diagnosis came out of the blue. I was otherwise healthy, and only one relative, my grandmother, in my small family tree had also had cancer. My doctors didn’t appreciate how significant that one relative could be, and my health care team didn’t mention genetic testing. I had no idea that my cancer could be hereditary.
It was a fortuitous moment when, a year later, I read a magazine article about BRCA (BReast CAncer) genetic testing that connected the dots between my breast cancer and the ovarian cancer that claimed my grandmother’s life. That article introduced me to important facts about BRCA mutations: that they can cause cancer to run in families, and they increase the risk for breast cancer, ovarian cancer and other cancers. And perhaps most importantly, what I read showed me that although my doctors never recommended it, I was a candidate for genetic testing for a BRCA mutation. After reading that article, I decided to pursue genetic counseling and testing. My test result was positive: an inherited BRCA 2 gene mutation caused my breast cancer, and also put me at very high risk for ovarian cancer.
After my diagnosis and genetic testing, I felt very alone. I knew of no one who was in my shoes; no others who shared similar hereditary risk and fears; and utter confusion about how I could confront my newly found risk and influence my own future. I longed for a connection with others who had a BRCA mutation and shared the same dilemma. This was in 1998, when resources and support for people facing hereditary cancer were practically nonexistent. Ultimately, this led me to establish Facing Our Risk of Cancer Empowered (FORCE), the first nonprofit organization focused on serving people with inherited cancer risk, including those with a BRCA mutation. FORCE filled a significant void—and continues to do so—by providing not only credible information, but also vital connections and compassionate support that helps people at hereditary risk connect the dots and make informed medical decisions. FORCE annually provides tools and resources to help more than 150,000 people who are affected by hereditary breast, ovarian, and related cancers.
Since my diagnosis and the early beginnings of FORCE, so much progress has been made in research, support and awareness of hereditary cancer. High-profile celebrities, including Angelina Jolie, who openly shared their experiences with genetic testing have increased public awareness of BRCA mutations and cancer risk. Still, more education is needed. Because while many people are aware of the association between BRCA mutations and breast cancer, many others are not. Even fewer people know that about 15 percent of women with ovarian cancer have BRCA mutations. In fact, national expert guidelines recommend that all women with ovarian cancer—regardless of their age at diagnosis, and even those with no other cancer in their family—receive information about genetic testing. Despite these guidelines, many women never receive this important information. They never connect the dots about hereditary cancer, how it raises their risk for various cancers, and options they may have to manage and reduce that risk.
Helping women with ovarian cancer to connect the genetic dots is a priority for FORCE. We cannot leave this important health information to chance. FORCE’s KNOW MORE: Ovarian Cancer Campaign connects women who have ovarian cancer with critical information about cancer genetics, new treatment options, resources to find genetics experts, the latest expert guidelines, and clinical trials. Our accompanying Peer Navigation Program connects ovarian cancer survivors with compassionate support, and helps these women make important and potentially lifesaving decisions about their health.
This September, during Ovarian Cancer Awareness Month, I encourage every woman with ovarian cancer – whether you are newly diagnosed, in treatment, or a long-term survivor – to take that first step to connect the dots. Visit our KNOW MORE site to learn about the national expert guidelines on genetic testing. While you’re there, sign up for our Peer Navigation Program that will match you to a highly-trained peer who has faced a similar medical journey. Other worthwhile resources include www.myOCJourney.com, The National Comprehensive Cancer Network, the National Ovarian Cancer Coalition, and the Ovarian Cancer Research Fund Alliance.
Throughout the month of September, you can also help others to connect the dots by changing your profile picture to teal. Show your support and raise awareness about genetic testing for hereditary ovarian cancer. Visit the FORCE Facebook page to learn more.
Sue Friedman founded Facing Our Risk of Cancer Empowered (FORCE) in 1999 to provide individuals and families with information that can help them to advocate for themselves in their journey with hereditary cancer. She is a 20-year breast cancer survivor and lives in Gulfport, Florida with her husband and son. Sue is co-author of the book, Confronting Hereditary Breast and Ovarian Cancer, which was published in 2012. For more resources on hereditary breast and ovarian cancer, visit FORCE.