Early Path to Prevention


Tarsha Jones, Ph.D.

Early Path to Prevention

Guiding Young Breast Cancer Survivors

When it comes to surviving breast cancer, a person’s age at diagnosis, genetics, racial and ethnic background, as well as socioeconomic status, all matter, according to Tarsha Jones, Ph.D., assistant professor, FAU’s Christine E. Lynn College of Nursing and member of the Memorial Cancer Institute/Florida Atlantic University (MCIFAU) Florida Cancer Center of Excellence.

Breast cancer kills nearly 44,000 people in the U.S. each year and 685,000 worldwide. Addressing breast cancer is an urgent public health issue, Jones said. Each year, in the state of Florida, MCIFAU follows around 900 new patients with breast cancer from diagnosis to therapy to survivorship programs.

Young breast cancer survivors diagnosed prior to age 40 are a rapidly growing population in the U.S., with more than 12,000 young women diagnosed annually with breast cancer. Young women have profoundly different experiences compared to older women and face many challenges as they transition from active treatment into the survivorship period. For example, younger women experience:

  • Diagnosis strongly associated with mutations in breast cancer genes, such as theBRCA1/2mutation
  • Delay in diagnosis
  • Larger tumors, advanced stage breast cancer, with node involvement, and biologically aggressive tumors such as triple negative breast cancer
  • Higher rates of recurrence
  • Development of contralateral breast cancer in the opposite breast
  • Higher mortality rate from breast cancer compared to older women with breast cancer

Black and Hispanic/Latina young breast cancer survivors are particularly vulnerable. These women suffer greater cancer-related health disparities, with breast cancer being the leading cause of cancer-related deaths for both groups. Black women in general have a 40% higher mortality rate from breast cancer compared to white women and Hispanic/Latina women are diagnosed with advanced stage cancer and have barriers to timely care, especially for those who are Spanish-speaking.

Jones said she seeks to understand the experiences of young racially and ethnically diverse breast cancer survivors, particularly in South Florida, to improve survival and health outcomes for this population. “Historically, research studies including my own previous work, have shown that there is an underutilization of genetic testing among young breast cancer survivors,” Jones said. “Genetic counseling followed by multigene panel testing is an absolute priority for these young women, regardless of race/ethnicity in order for them to understand their hereditary cancer risk.”

In addition, young women with positive genetic test results need decision support and resources for cancer risk management, she said. Family risk communication and subsequent cascade genetic testing of at-risk relatives can potentially reduce disparities and ultimately save lives from breast cancer. However, genetic testing among unaffected high-risk family members remains low, Jones added.

“Our preliminary results show that the majority of young breast cancer survivors are completing genetic testing at the time of their diagnosis and are communicating their results to family members,” she said. “However, there remains a need to support survivors in which relatives disclose their results to and to encourage their family members to get their own genetic tests and to make informed decisions for risk management.”

Jones’ research shows young survivors are reporting several unmet needs like ageappropriate information to manage breast cancer and to reduce their risk of recurrence and subsequent cancers. They also need peer-support from other young survivors, as young women feel overwhelmed with the multiple decisions that they face.

Jones recently received a National Institutes of Health Career Development Award, a fiveyear, $772,525 grant for a project to provide age-appropriate and culturally relevant information to diverse young survivors, addressing the need for multigene panel testing, promoting family communication, and providing women with decision support and actionable recommendations for riskreduction. Also, MCIFAU and leaders are taking steps to address cancer disparities in the state of Florida. For example, in 2021, the Florida Society of Clinical Oncology approved the organization of an annual national cancer disparities conference, currently entering a third year.

If you would like more information, please contact us at dorcommunications@fau.edu.