What CDC Is Doing About Breast Cancer in Young Women

CDC works with public, non-profit, and private partners to address breast cancer in women by conducting research, convening the Advisory Committee on Breast Cancer in Young Women, funding education and survivorship programs, and educating young women and medical providers about breast cancer and breast health. Some of CDC’s major projects are listed below.

Advisory Committee on Breast Cancer in Young Women

This committee provides guidance regarding development, implementation, and evaluation of evidence-based activities aimed at prevention, early detection, and survivorship.

Public Health Research

• Breast cancer in young women: reviewing the evidence and setting the course. CDC commissioned a literature review, environmental scan, and expert panel on topics related to breast cancer in young women to identify where the scientific evidence indicates opportunities for public health intervention or a strong need for research.
• Sisters Study extension. The National Institute of Environmental Health Sciences has been conducting a study on 52,000 women who have a close relative with breast cancer to assess genetic and environmental risk factors. CDC added two surveys to their yearly follow-up that assesses risk perception, provider communication, access to and use of support services, and information needs and information-seeking behavior among young breast cancer survivors and their sisters.
• Promoting cancer genomics best practices through surveillance, education, and policy change projects. CDC’s Division of Cancer Prevention and Control worked with CDC’s Office of Public Health Genomics by adding funding to support their cooperative agreements with Oregon and Michigan. This funding was used to increase the scope of those agreements to support additional breast cancer genomics-related activities.
• Estimates of young breast cancer survivors at risk for infertility in the U.S. This study estimated the number of women who have been diagnosed with breast cancer and may have compromised fertility as a result of their treatment. Findings are being used to describe the magnitude of infertility among young breast cancer survivors on a national level, establishing a baseline number of at-risk women.
• Health and economic impact of breast cancer mortality in young women, 1970–2008. This study assessed trends in breast cancer death rates among women between 20 and 49 years old and estimated the years of potential life lost and the value of productivity losses due to premature death.
• Opportunities for public health communication, intervention, and future research on breast cancer in younger women. This study reports the results of an informal meeting of 18 experts in oncology, genetics, behavioral science, survivorship and advocacy, public health, communication, ethics, nutrition, physical activity, and environmental health, who discussed opportunities for research and public health communication related to breast cancer among young women.
• Prevalence and health care actions of women in a large health system with a family history meeting the 2005 USPSTF recommendation for BRCA genetic counseling referral. This study found a higher prevalence of women with an increased-risk family history than originally predicted by the USPSTF, and lack of provider recognition and referral for genetic services.
• Quality of life of younger breast cancer survivors: persistence of problems and sense of well-being. Ten years after diagnosis, women diagnosed with breast cancer at age 50 or younger reported poorer general health and physical well-being, less sexual activity, and more chronic conditions than at five years.
• Health insurance coverage of genetics services. This study reviews major public and private health insurance plans to assess coverage for genetic counseling and testing for BRCA1 and BRCA2 gene mutations, prevention techniques for those who test positive, and psychosocial support services.
• Walking Together: Making a Path Toward Healing. This study identified information needs and physical, psychological, and spiritual obstacles to care faced by American Indian and Alaska Native women under the age of 45 who were diagnosed with breast cancer.
• Impact of genomics and personalized medicine on the cost-effectiveness of prevention and screening for breast cancer in younger women.
• The Economics of Breast Cancer in Younger Women in the U.S. This is the first population-based study describing the economic impact of breast cancer on young women.
• Comparative effectiveness and clinical utility of risk assessment tools for hereditary breast and ovarian cancer. This study compares risk assessment tools, models, and algorithms for breast and ovarian cancer risk or decision aids for referral to genetic counseling and testing.
• The economic impact of late-stage breast cancer diagnosis and benefits of reducing alcohol consumption among women aged 18–44 years at high risk for breast cancer. This study estimates the costs of breast cancer treatment stage at diagnosis for women between 18 and 44 years old, the number of breast cancer cases attributed to alcohol use among young women, and the economic benefits to health in reducing alcohol consumption in women who have a high risk of getting breast cancer before age 45.

Communication and Education

• Know:BRCA Web application and clinical decision support tool for women and their providers. This tool helps women assess their risk for mutations to their BRCA1 and BRCA2 genes, directs those at higher risk to appropriate support services, and helps improve communication between women and their doctors.
• 90210 television series multiple-episode storyline. Through Hollywood, Health & Society, CDC used entertainment education to reach women regarding breast cancer risk factors.
• Social media usage for breast cancer awareness and survivors. This project established the research background, strategy, and recommendations for reaching young women ages 15–44 years who have an increased risk for breast cancer, and young breast cancer survivors through social media.
• SocialMediaWorks. This tool was developed to support CDC’s social media efforts related to breast cancer in young women. It is used by health communicators and those who need to plan, implement, and manage social media initiatives.

Support for Young Women Diagnosed with Breast Cancer

• Cooperative agreement to support young women diagnosed with breast cancer. In September 2011, CDC awarded funding to seven organizations to establish or enhance existing support services for young breast cancer survivors and their families. Another cooperative agreement, “Developing Support and Educational Awareness for Young (<45) Breast Cancer Survivors in the United States,” also funds these organizations to educate health care providers about breast cancer survivorship.
• Evaluation of the “Developing Support and Educational Awareness for Young (<45) Breast Cancer Survivors in the United States” cooperative agreement. CDC commissioned a comprehensive evaluation of the efforts of the seven funded programs that support and educate young breast cancer survivors.
• Cooperative agreement to enhance breast cancer genomic practices through education, surveillance, and policy. Funding from this cooperative agreement enhances three state health departments’ capacities to promote applications of evidence-based breast cancer genomics best practices through education, surveillance, and policy, addressing the needs of young women at high risk for developing breast cancer.
• Developing psychosocial and reproductive health support for young breast cancer survivors in the United States: an evaluation of existing survivorship support resources. CDC works with Sharsheret and Sisters Network, Inc. to identify, strengthen, evaluate, and promote real-world, evidence-based interventions that provide psychosocial and reproductive health support to young breast cancer survivors.