Breast cancer survivors in the Seattle area can now help fight this deadly disease thanks to the Cancer Support Community’s Research and Training Institute.

Through a new, first-of-its-kind registry for breast cancer survivors, women with breast cancer can now join fellow survivors from across the country in a nationwide effort to improve survivorship.

The registry will monitor survivors who have volunteered to share their breast cancer experiences with researchers to help them better understand the distress women experience during their cancer journey.

The registry, known as the Breast Cancer M.A.P. (Mind Affects the Physical) Project, aims to recruit more than 1,000 survivors to answer questions about the emotional and social needs that accompany a breast cancer diagnosis, on an annual basis. Study findings will be shared with the breast cancer community in a yearly index highlighting trends and key learnings and providing recommendations for innovative ways to address the impact of the disease throughout the course of treatment and survivorship.

“Research shows that the right emotional support can have a significant impact on quality of life for breast cancer survivors, and often reduce troublesome symptoms and improve health,” said Barbara L. Andersen, Ph.D., professor, department of psychology, Ohio State University. “This movement will assist oncologists and patients in better understanding the importance of managing distress to fight the disease.”

A recent survey from the Cancer Support Community showed that four out of five women affected by breast cancer experienced some form of distress because of their cancer and more than half felt their emotions had been misunderstood. These data reinforce findings from the Institute of Medicine (IOM), which firmly established the need to better understand and improve the emotional and social needs of breast cancer survivors through a series of evidence-based reports. Additionally, a study previously published in the journal Cancer provided evidence that emotional support improved psychological and behavioral outcomes among breast cancer patients, and may also increase their chance of survival, decrease their risk for recurrence, and decrease their risk of dying from other conditions.

“By listening to the shared experiences of breast cancer survivors, we can bridge the gaps in our knowledge and help inform new resources that support their most critical needs,” said Joanne Buzaglo, Ph.D., senior director of research at the Cancer Support Community’s Research and Training Institute. “Our success depends greatly on the participation of breast cancer survivors. As the registry grows, so will our ability to change the breast cancer experience.”

Breast cancer survivors are able to participate in the registry by signing up online at www.breastcancerregistry.org or by calling 1-888-MAP-CSC9 (1-888-627-2729). Oncologists, primary care physicians and oncology social workers interested in learning more about the registry should visit the website for more information.

“Dealing with my cancer has been challenging at every stage of the disease – from the time I was diagnosed, after treatment stopped and when the cancer spread,” said Paula Benoist-Falwell, a breast cancer survivor. “My hope is if enough women like me sign up for this registry and share their experiences, we’ll be able to better understand the benefits of emotional support and create resources that will help women along their journey to healing.”

Thanks to great scientific advances and breakthroughs, more women than ever are surviving breast cancer. In fact, there are now more than 2.5 million breast cancer survivors in the United States. With the rise in survivorship, there is a need to recognize and identify the new challenges beyond those experienced at diagnosis and during treatment. Made possible through a generous grant from The Breast Cancer Fund of National Philanthropic Trust, the Breast Cancer M.A.P. Project was developed to tackle this very challenge.