Research from Florida Atlantic University’s Christine E. Lynn College of Nursing is highlighting an increase in breast cancer diagnoses among women under 50, drawing attention to early-onset breast cancer during National Breast Cancer Awareness Month.
Led by Tarsha Jones, RN, Ph.D., associate professor and principal investigator, the study focuses on young breast cancer survivors (YBCS) and the significance of genetic testing, risk reduction, and family risk communication. Supported by a multi-year grant from the National Institutes of Health, the research examines the experiences and challenges faced by younger women diagnosed with breast cancer.
The research team conducted a cross-sectional study surveying 97 YBCS, all diagnosed before age 50, recruited from cancer centers in New York and Florida, as well as through community organizations. The findings point to the need for increased awareness of early warning signs and proactive risk management. While mammograms remain essential, self-awareness and prompt action are emphasized.
“Our data shows that genetics – such as pathogenic mutations or variants – is only part of the big picture. We found that while most women, 93%, completed genetic testing, the majority, 76.1%, had negative test results,” said Jones. “We recognize that there are multiple determinants of health at play, and more research is needed to investigate the complex interaction between biological, behavioral, psychological, social and environmental exposures in order to reduce cancer health disparities and improve health outcomes for all women.”
Four study participants shared their experiences as part of a digital storytelling project aimed at educating and supporting other women facing similar diagnoses.
Anastasia, a Black/African American participant, discovered a lump at age 28 and was later diagnosed with stage IIb triple-negative breast cancer. Genetic testing revealed a BRCA1 mutation, leading her to take preventive measures for ovarian cancer. She said, “I encourage anyone going through this process to get tested – not just for yourself, but for your loved ones. Early testing can provide clarity and potentially spare you and your family from the many procedures I had to endure.”
Margalit, of Ashkenazi Jewish descent, was diagnosed at age 31 during the pandemic and underwent extensive treatment. She highlighted the lack of resources for post-treatment support: “Post-cancer aftermath was harder than active treatment – and while that’s not true for everyone, resources are lacking for those who are struggling.” She emphasized the importance of peer networks and community: “I believe that the most effective treatment for these challenges is finding community.”
Monica, a Hispanic participant, found a lump at age 37 and faced a recurrence shortly after initial treatment. She advocates for self-advocacy and awareness: “I just want to make sure the next person doesn’t have to go through everything I did.” She urges young women to be their own advocate and ask questions.
Nediva, a Black/African American participant, was diagnosed at age 33 and later faced a recurrence with metastatic disease. She adopted a holistic approach to her wellness journey and shared, “This is my story – about living with metastatic breast cancer, surviving, thriving and being a ‘Warrior Queen.’”
With support from an NIH Mentored Research Scientist Award and collaborations across disciplines, Jones is developing a digital storytelling intervention tailored to YBCS’ educational, clinical, and psychosocial needs.
Cameron Duncan, Ph.D., DNP, dean of the Christine E. Lynn College of Nursing, commented on the college’s approach: “At FAU’s Christine E. Lynn College of Nursing, a caring science approach grounds everything we do – including breast cancer research. This philosophy transforms data into dignity, recognizing that behind every statistic is a whole person whose well-being is nurtured through presence, compassion and meaningful connection.” Duncan added, “This research is a vital step forward in understanding and addressing the unique challenges young women with breast cancer face. By shedding light on these early diagnoses, we strive to inspire hope, drive prevention and ultimately save lives.”
According to the American Cancer Society, about 316,950 new cases of invasive breast cancer will be diagnosed in women in the United States this year, and about 42,170 will die from the disease. Jones noted, “Women under 50, represent 16% of the total invasive breast cancer cases, according to the American Cancer Society. Younger women with breast cancer have profoundly different experiences, complex challenges and are more likely to die of the disease compared to older women with the disease, emphasizing the critical importance of ongoing support for women’s health research.”
The stories were shared with permission from the survivors, and the research is supported by the NIH-National Cancer Institute (K01CA241393-05).
