The Carolina Breast Cancer Study, UNC Lineberger’s landmark population-based study of breast cancer risk, biology, and outcomes that focuses on young and African-American women in North Carolina, recently celebrated the 10-year anniversary of its third phase.
The study’s leadership hosted events this fall in Concord, Greenville and Cary to bring together and recognize the contributions of the study’s participants and their caregivers. Between 2008 and 2013, the study enrolled 3,000 participants shortly after their breast cancer diagnosis, and they have been followed for up to 10 years to capture information about additional treatments and outcomes.
The events featured presentations on a range of topics, including breast cancer advocacy, self-care and stress management, an “ask the expert” question-and-answer session, and resource tables from community and health care organizations.
Study leaders wanted to thank study participants, as well as to provide resources and information about the study’s findings, said UNC Lineberger’s Melissa Troester, PhD, professor in the UNC Gillings School of Global Public Health and the study’s principal investigator.
“We wanted to celebrate this partnership, to remember and honor those women who have died, and to share our scientific findings to help inform survivors based on our public health findings,” Troester said.
Through the study, researchers established a long-term relationship with participants, and study leadership wanted to support the survivors, said UNC Lineberger’s Andrew Olshan, PhD, professor in the UNC Gillings School of Global Public Health.
“Women are enrolled soon after diagnosis with breast cancer, and then we follow them for 10 years or longer,” said Olshan. “We wanted to thank them for this partnership, and to give back, sharing what this study has found, and offering information to address health questions and issues that survivors may be having.”
Supported in part by the University Cancer Research Fund and Susan G. Komen, the Carolina Breast Cancer Study originally opened in 1993 to investigate the causes of breast cancer in black and white women in North Carolina. Today, it is one of the largest African-American breast cancer resources in the United States.
Troester said that the researchers intentionally focused on enrolling a higher percentage of younger women and black women with breast cancer in the study, since they are understudied and represent a minority of breast cancer cases diagnosed in the United States.
“Most studies examine a portion of all-comers, and young women and black women are under-represented, but in this study we have good power to study their experience,” she said.
The first two phases of the study were designed to investigate causes of breast cancer, while the third phase focused on women’s experience after diagnosis. The intent is to address disparities in breast cancer outcomes.
“The goal of this study is to identify ways that we can intervene on biology or access to health care to close the disparity in survivorship between black and white women, and younger and older women,” Troester said.
The study has generated many key insights into how breast cancers can affect women differently based on their age and race, and findings that have led to new, more targeted treatments for these different types of breast cancers.
Recently, they revealed findings about the financial impact, or toxicity, of having and being treated for breast cancer, and showed the differential financial burden the disease can place on black women. They also found that mammography may have different efficacy for different types of breast cancer, and that some breast cancer subtypes are more common in younger women, regardless of race. Another finding they hope to address is that black women may experience delays in treatment initiation or completion compared to white women. They plan to continue to build on the study’s findings from the first 20 years.
“There will still be valuable findings from the study that we still have not yet uncovered,” Olshan said.