Young Breast Cancer Survivors Program

Overview

Breast cancer is one of the most common cancers among women in the United States. About 10% of all new cases of breast cancer in the United States are in women younger than 45. These young women are called young breast cancer survivors (YBCS). They often face difficult medical, social, emotional, and financial issues related to their diagnosis and treatment.

More than 150,000 women in the United States are living with metastatic breast cancer (MBC), and 3 in 4 of them were originally diagnosed with an earlier stage of breast cancer.1 Metastatic, or stage IV, breast cancer is when cancer cells have spread from the breast to distant parts of the body. Women with MBC have distinct challenges that greatly affect their physical and mental health. Care for women with MBC is intense and expensive, particularly in younger women with cancer that is more aggressive and harder to treat.

In 2024, CDC funded 11 organizations for 5 years to provide structured support services and resources for YBCS, women with MBC, and their caregivers and families. These services and resources are intended to increase patients' survival and improve their quality of life. These organizations also provide educational resources for clinicians. The program focuses on YBCS and women with MBC in groups who face social and financial challenges and have higher rates of breast cancer, including African American, Black, Asian, Pacific Islander, American Indian, Alaska Native, Hispanic, and Ashkenazi Jewish women and women with physical, mental, or emotional disabilities.

The funded organizations are:

• Adelphi University
• The Board of Trustees of the University of Illinois
• Breast Cancer Resource Center
• Dana-Farber Cancer Institute
• Facing Our Risk of Cancer Empowered (FORCE)
  
• Living Beyond Breast Cancer
• Michigan Department of Health and Human Services
• National Association of Chronic Disease Directors
• Sharsheret, Inc.
• Joan and Sanford I Weill Cornell Medical College
• Young Survival Coalition

Program strategies

Through partnerships with health care systems and community-based organizations, the program has expanded access to genetic counseling and testing, psychosocial support, and educational resources.

The funded organizations:

• Work with nongovernmental organizations that serve priority groups). The program has convened health care professionals, cancer survivors, and caregivers to educate interested groups about priority groups' unique health issues.
• Work with cancer coalitions across the United States to add strategies to cancer control plans that support YBCS and women with MBC.
• Educate YBCS and women with MBC and their caregivers, family members, and friends on coping with the side effects of treatment.
• Develop action plans for policy, systems, and environmental (PSE) change interventions that support the unique needs of YBCS and women with MBC.
• Learn about existing educational opportunities for health care professionals and develop new educational materials that provide information not available elsewhere.
• Provide access to psychosocial support for YBCS, women with MBC, and their caregivers and families. This support will help them cope with disease-related emotions, increase social support, improve their relationships with their family and doctors, and manage symptoms and side effects.

Focus on triple-negative breast cancer

Some of the funded organizations focus on increasing education, support, and care for YBCS and MBC patients with triple-negative breast cancer (TNBC). These organizations will receive funds from CDC to increase awareness about risk, diagnosis, treatment options, and support resources. The organizations will create resources to help community health workers and patient navigators support women with TNBC. The organizations will also provide education for doctors about talking with their patients about treatment decisions, clinical trials, and palliative care.

Examples of TNBC resources include:

• FORCE provides genetic testing resources, peer navigation matched by cancer type and mutation status, and support for previvors through online groups and digital tools. Previvors are people with gene mutations that increase their chance of getting cancer. Previvors have not been diagnosed with cancer.
• Living Beyond Breast Cancer offers information about TNBC, a helpline connecting individuals with TNBC survivors, and genetic testing resources.
• Sharsheret delivers culturally specific support for Jewish women, including education on gene mutations associated with TNBC risk, peer-to-peer support, and webinars.

Evaluation

This program builds on the successes of previous programs. For further improvements, evaluation allows a program to build on its successes, grow, and evolve. The evaluation assesses the extent to which the funded organizations:

• Increase access to and availability of psychosocial and structural support services for YBCS, women with MBC, and their caregivers and families.
• Improve communication between patients and their doctors.
• Improve organizations' engagement with, and contributions to, structural and psychosocial support services for YBCS, women with MBC, and their caregivers and families.
• Increase use of culturally appropriate interventions to expand program reach among survivors from various cultures, identities, and backgrounds.
• Establish and maintain structural and psychosocial services in places that YBCS, women with MBC, and their caregivers and families often visit.