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ACCC Launches Initiative to Address Communications Challenges Faced by Metastatic Breast Cancer Patients

June 1, 2016

ROCKVILLE, MD. – The Association of Cancer Care Centers (ACCC) announced today the launch of the Metastatic Breast Cancer Project to address the unique communications challenges faced by patients with metastatic breast cancer (MBC). ACCC is partnering with the Avon Breast Cancer Crusade, the Cancer Support Community, and the Metastatic Breast Cancer Alliance (MBC Alliance) on this education initiative, with funding and support from Pfizer Oncology.

Thanks to the combined efforts of researchers, clinicians, advocacy organizations, and patients and their families, tremendous advances have been realized in early detection, diagnosis, and treatment of breast cancer. Despite this progress, in the United States it is estimated that 150,000–250,000 women are currently living with metastatic breast cancer. 1 Metastatic disease—the most advanced stage of breast cancer in which cancer has spread beyond the breast to other organs in the body— remains an incurable condition and is the second leading cause of cancer death among women today. 2, 3, 4

Public awareness of breast cancer and the importance of early detection and treatment is pervasive. At the same time, public understanding of metastatic breast cancer—late-stage disease—is lacking. “The public has a limited knowledge of what ‘metastatic’ means in relation to breast cancer. Sadly, many current breast cancer initiatives do not focus on the metastatic community. People living with the disease are frustrated by a lack of knowledge and misinformation about metastatic breast cancer,” said Marc Hulbert, PhD, Chair, MBC Alliance.

ACCC seeks to expand the current breast cancer conversation to address gaps in communications between early and metastatic disease; and improve communications around treatment and management of metastatic breast cancer in the community oncology setting. “As we strive to deliver personalized, patient-centered care, we must empower patients to participate fully in two-way conversations with their providers,” said ACCC President Jennie R. Crews, MD, MMM, FACP.

"The ACCC Metastatic Breast Cancer Project directly addresses a need identified as part of our Breast Cancer: A Story Half Told initiative—the need to generate more productive discussions between physicians and patients with metastatic breast cancer," said Julia Perkins Smith, MD, North America Medical Affairs Lead, Pfizer Oncology. "Pfizer is deeply committed to helping meet the unique needs of the MBC community, and we are excited to support the innovative work ACCC is doing in this area. Like ACCC, our hope is that this project will enable patients with MBC to gain a better understanding of their disease and have a stronger voice in their treatment decision-making."

The project will provide:

  • Information on the current state of metastatic breast cancer treatment and patient management.
  • Examples of effective communications practices in metastatic breast cancer treatment and patient management.
  • Access to the Cancer Support Community’s Cancer Experience Registry: Metastatic Breast Cancer.

"The Cancer Experience Registry, the only registry of its kind, allows patients and caregivers to share their unique experiences to help to improve the quality of life for people living with a cancer diagnosis. A special section of the Registry is dedicated to understanding the social and emotional needs of people living with metastatic breast cancer. Information pulled from the Registry will provide partners with cutting-edge trends around the challenges associated with metastatic breast cancer. These findings will aid in the development of tailored resources and tools and help advance patient-centered care," said Joanne Buzaglo, PhD, Senior Vice President, Research and Training Institute of the Cancer Support Community.

This ACCC project is strengthened by partnerships with the MBC Alliance, Avon Breast Cancer Crusade, and the Cancer Support Community.

"The Avon Breast Cancer Crusade is proud to help shine a bright light on the unique needs of MBC patients and their families and advance the capability of the breast cancer community as a whole to better meet these needs," said Carolyn Ricci, Program Director, Avon Breast Cancer Crusade.

To learn more about the ACCC Metastatic Breast Cancer Project, visit the ACCC website at accc-cancer.org/MetastaticBreastCancer.

1 Living Beyond Breast Cancer. Silent voices: women with advanced (metastatic) breast cancer share their needs and preferences for information, support and practical service. Available at: http://www.advancedbc.org/node/26.

2 BreastCancer.org. Stages of Breast Cancer. Available at: http://www.breastcancer.org/symptoms/diagnosis/staging.

3 American Cancer Society. Treatment of invasive breast cancer, by stage. Available at: http://m.cancer.org/cancer/breastcancer/detailedguide/breast-cancer-treating-by-stage.

4 The Journal of Cancer Research. Breast Cancer Metastasis: Challenges and Opportunities. Available at: http://cancerres.aacrjournals.org/content/69/12/4951.

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