Just Being at High Risk for Breast Cancer Is a Life-Changing Experience
Young African American women at high risk for breast cancer described the risk itself as a life-changing experience, according to a study released today at the Oncology Nursing Society (ONS) 11th National Conference on Cancer Nursing Research. Researchers interviewed 19 African American women, age 22–40 to better understand the experiences of young African American women who are at risk for breast cancer.
Oncology nurse researchers Marlene Z. Cohen, PhD, RN, FAAN, from the University of Nebraska Medical Center in Omaha, and Janice Phillips, PhD, RN, FAAN, from the University of Chicago Medical Center presented the finding. Little is known about risk perceptions and surveillance behavior in the study group population. High risk is defined as a personal history, family history of breast cancer, and/or positive genetic mutation for breast cancer.
“It was surprising to me how very distressing the risk status itself is to both the women and their loved ones,” said Cohen. “One woman described it as ‘a dagger hanging by a thread’ over her head. It was clear that education and support is needed for these women and their families as well as for nurses who care for and counsel high-risk populations.”
While the overall incidence of breast cancer is higher in Caucasian women after age 45, a higher incidence of breast cancer exists in African American women under age 45. Once diagnosed with breast cancer, young African American women often present with aggressive tumor types that are less responsive to traditional breast cancer treatment.
Study participants identified a number of themes as a result of being at risk for breast cancer. Relationships were often changed from this experience; some ended and others became closer. Informing family, especially daughters, and raising awareness in the community were important. Women with or without a breast cancer diagnosis identified reducing stress and weight management as critical to reducing personal breast cancer risk. Faith in God was central to living with a potential threat or actual diagnosis of breast cancer.
“It was an honor to talk with young women and listen as they shared their experiences around breast cancer,” said Phillips. “They were very happy to share their concerns while expressing concern for other young women. Ongoing efforts are needed to help ensure that all young women faced with breast cancer issues have adequate and appropriate resources and support.”
Women expressed that breast cancer can develop at any age, thus healthcare professionals need to be educated about this. Issues of cost of health care and tests were often prohibitive with implications for delays in treatment. Findings from this study underscored the need for targeted education and emotional support for young, high-risk women.
Study funded by National Institute of Nursing Research and the University of Illinois Center for Reducing Risks in Vulnerable Populations (CCRVP) 5 P30 NR009014.
ONS is a professional organization of more than 35,000 registered nurses and other healthcare professionals committed to excellence in oncology nursing and to leading the transformation of cancer care by initiating and actively supporting educational, legislative, and public awareness efforts to improve the care of people with cancer. ONS provides nurses and healthcare professionals with access to the highest quality educational programs, cancer care resources, research opportunities, and networks for peer support. Learn more at www.ons.org.