Conversations About Hereditary Breast and Ovarian Cancer Save Lives

June 8, 2021Amy Hill

Breast cancer is the most common cancer among women in the United States. Although most breast cancers are diagnosed in older women, about nine percent of all breast cancer cases in the U.S. are found in women younger than 45. Risk for breast cancer among young women varies, based on factors such as family and personal history of cancer. Many young women do not know their breast cancer risk or are not aware of ways to lower their risk. Many healthcare providers do not have the resources they need to appropriately counsel patients about these issues.

Learning about family history of cancer on both their mother’s and father’s sides can help young women know if they are more likely to get breast or ovarian cancer at a young age. Recognizing the need to support family conversations about family history of cancer and genetic counseling and testing for cancer risk, the National Association of Chronic Disease Directors, with funding from the Centers for Disease Control and Prevention, collaborated with StoryCenter on a hereditary breast and ovarian cancer storytelling project. In two online digital storytelling workshops, held over six weeks in January and February, 2021, a diverse group of women from around the country shared and produced intimate stories about how cancer has affected their lives. In the winter of 2022, StoryCenter followed up the work with survivors and family members with a three-week storytelling workshop and subsequent production collaboration with talented visual artists. Through this process, a group of health providers shared intimate stories about working with cancer patients and their families. In the fall of 2023, StoryCenter led another digital storytelling project with Appalachian survivors of breast and ovarian cancer.

The hope is that the short videos by survivors and family members will inspire young women to learn about their risk for breast cancer, talk with their health care providers about their family histories, and live breast-healthy lifestyles. Similarly, the videos by providers are intended as a tool for communication and education for their peers, to offer them examples of how to demonstrate empathy and take into account the many social, emotional, and practical factors at play when addressing hereditary cancers. Both sets of stories are being screened and shared online with women and providers, to better support family discussions about known or unknown family history, health behaviors associated with risk, and breast cancer risk management strategies.

View and download an instructional guide for healthcare providers, which offers discussion questions and additional resources for educating patients about genetic testing.

The Helping Families Communicate About Hereditary Breast or Ovarian Cancer project is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $450,000 with 100 percent funded by CDC/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.