By Tarsha Jones, PhD, MSN, PHNA-BC

A south Florida woman was just 36 when she was diagnosed with breast cancer. She found a lump in her breast that became tender, so she went in for a visit with her physician, who confirmed that it was suspicious on examination. She had no family history of breast cancer or significant medical issues. The provider ordered a mammogram but nothing abnormal showed up. A biopsy was performed and she was diagnosed with hormone positive breast cancer. She initially underwent a lumpectomy and other treatments; however, she asked her doctor, “can you tell me that there is no cancer left anywhere?” the doctor told her “no” I cannot guarantee that. She also completed genetic testing to rule out hereditary breast and ovarian cancer (HBOC) syndrome, which was negative. She decided to have a double mastectomy for “peace of mind.” However, seven years after the double mastectomy, her doctor felt another lump under the reconstructed breast. After further work-up, she had a recurrence of her breast cancer.

Unfortunately, this is one of many cases of women below age 40 who are diagnosed with breast cancer each year. There is no doubt that the incidence of breast cancer increases with age, with the median age of diagnosis among women 62 years old. However, 4% of invasive cases (10,850) occur among women less than 40 years of age and 13% of new invasive cases (36,710) occur among women ages 40-49 years, according to the American Cancer Society. Younger women are diagnosed with more biologically aggressive tumors such as Triple Negative Breast Cancer (TNBC) compared to older women, advanced stage tumors, higher grade, and more lymph node involvement. Furthermore, racial and ethnic disparities persist. Black women have the highest incidence rate of breast cancer before age 40 and Black women in general have the highest death rate (27.6 per 100,000), which is 40% higher than the rate observed in White women (19.7 per 100,000).

As assistant professor at Florida Atlantic University’s Christine E. Lynn College of Nursing and principal investigator of a National Institutes of Health (NIH) K01 Award funded by the National Cancer Institute, titled “Decision Support for Multigene Panel Testing and Family Risk Communication among Racially/Ethnically Diverse Young Breast Cancer Survivors,” my goal is to gain a better understanding of the experiences, challenges, and needs of younger women who are diagnosed with breast cancer and to increase their participation in research. The first phase of the five-year research project involves a group of racially/ethnically diverse women diagnosed with breast cancer within the past five years, completing a survey about their global health, mental health, family history, risk factors, treatments, surgeries, genetic testing, family risk communication, their needs, interests and more. A subset of these women is invited to participate in a one-on-one qualitative interview and/or focus groups in English or Spanish.

Preliminary findings indicate that most women were diagnosed in their 30’s after discovering their own lump and advocating for themselves to get to a cancer diagnosis. A majority of the women enrolled to date, have completed genetic testing at the time of their diagnosis and had access to quality treatments and surgeries. However, some women shared that they had a recurrence of their breast cancer years later, even after having had a double mastectomy. Research shows that while the risk of cancer recurrence is lower when the whole breast is removed, a recurrence remains a probability. In our study, we are looking closely at differences, based on race and ethnicity to gain further insights into racial disparities. Since young breast cancer survivors may have inherited a pathogenic mutation or variant in a breast cancer gene (BRCA1, BRCA2, PALB2, CHEK2, etc.), we are examining completion rates, genetic testing results, and risk-reduction behaviors taken after diagnosis to reduce the risk of recurrence and the development of new cancers.

Along with my team of incredible mentors, we are moving toward further development and pilot testing of an intervention that is tailored based on the unique needs of young women, race and ethnicity, and cultural preferences. Ultimately, we want to empower these women and their at-risk family members with decision support, knowledge, and resources to survive breast cancer.

If you are interested in participating, please contact our study team at breastcancerresearch@health.fau.edu or (561) 297-4975.

 Dr. Tarsha Jones is Assistant Professor, Florida Atlantic University Christine E. Lynn College of Nursing, and principal investigator of an NIH funded breast cancer study.