New Online Tool Available to Help Health Care Providers Identify a Hard to Diagnose Breast Cancer

A new diagnostic scoring system, developed by renowned breast cancer experts, is now available as an easy-to-use online tool through Susan G. Komen®, the world’s leading breast cancer organization. This tool will help health care providers recognize and effectively diagnose a rare and aggressive breast cancer, inflammatory breast cancer.

The new Inflammatory Breast Cancer (IBC) Scoring System online tool is available at and may help to increase diagnostic accuracy, predict outcomes, guide treatment decisions and inclusion in clinical trials.  

Before the development of the proposed IBC Scoring System, IBC lacked a formal, objective medical definition and diagnosis was often delayed, misdiagnosed or missed altogether. The new online tool is intended to provide the proposed IBC diagnostic criteria in a convenient tool to help more quickly and effectively recognize IBC in the clinic. 

IBC often develops rapidly and can easily be confused with a breast infection because of symptoms such as redness and swelling, and the frequent lack of a breast lump. IBC can be hard to see on a mammogram as it may only show up as skin thickening. This results in approximately 30% of IBC patients being first diagnosed at stage IV (de novo metastatic breast cancer), meaning their breast cancer has already spread to other parts of the body. 

“IBC has historically been difficult to diagnose and no changes to diagnostic approach have been made since the 1960s,” said Dr. Reshma Jagsi, Komen Scholar and Lawrence W. Davis Professor and Chair of the Department of Radiation Oncology at Emory University School of Medicine. “This first-of-its-kind tool may help health care providers recognize and diagnose IBC and may also enable researchers to study the biology of IBC, making discoveries to advance progress toward personalized care for all IBC patients in the future.”

The proposed IBC Scoring System was developed through a collaborative effort between Susan G. Komen, the Inflammatory Breast Cancer Research Foundation (IBCRF) and the Milburn Foundation, which brought together a team of leading breast cancer experts including clinicians, researchers, and IBC patients.  It is now being validated by a team of researchers at two of the largest IBC centers in the world led by Dr. Filipa Lynce at Dana-Farber Cancer Institute, and Dr. Wendy A. Woodward at MD Anderson Cancer Center. This work validating the scoring system is supported by a grant awarded by Susan G. Komen and is part of the groups’ collaborative efforts to advance IBC research and care through innovative approaches.

“I encourage my fellow health providers to use the IBC Scoring System when addressing patients having concerns about changes in their breast, such as swelling and redness. Using this tool may accelerate the diagnosis of IBC and start treatment at an earlier stage for those who have a confirmed diagnosis of invasive breast cancer,” said Dr. Lynce.

“The creation of this tool reflects the deep commitment of Komen, the Inflammatory Breast Cancer Research Foundation and the Milburn Foundation to accelerate progress in detecting and treating inflammatory breast cancer. With the help of leading scientists and medical providers across the U.S., we will help thousands of patients receive an earlier and more accurate diagnosis of this aggressive disease and get the high-quality care they need to survive,” said Senior Vice President of Mission for Susan G. Komen, Victoria Wolodzko Smart. “I have no doubt this tool will improve outcomes for all IBC patients in the future.”

About Susan G. Komen®

Susan G. Komen is the world’s leading nonprofit breast cancer organization, working to save lives and end breast cancer forever. Komen has an unmatched, comprehensive 360-degree approach to fighting this disease and supporting millions of people in the U.S. and in countries worldwide. Komen advocates for patients, drives research breakthroughs, improves access to high-quality care, offers direct patient support and empowers people with trustworthy information. Founded by Nancy G. Brinker, who promised her sister, Susan G. Komen, that she would end the disease that claimed Suzy’s life, Komen remains committed to supporting those affected by breast cancer today, while tirelessly searching for tomorrow’s cures. Visit komen.org or call 1-877 GO KOMEN. Connect with us on social at ww5.komen.org/social.

About Inflammatory Breast Cancer (IBC) Research Foundation

Since 1999 the Inflammatory Breast Cancer Research Foundation (IBCRF) has been leading the way in improving the lives of those touched by inflammatory breast cancer (IBC) through the power of action and advocacy. This is accomplished by tenaciously fostering innovative research, creatively educating stakeholders, and tirelessly advocating for both current patients and IBC survivors.

As a web-based non-profit, IBCRF relies on its dedicated volunteers across the country. Guided by the Medical Advisory Board, a group of extraordinary oncology professionals, IBCRF has funded patient-focused IBC research resulting in new discoveries as well as clinical trials. Learn more at www.ibcresearch.org or call 1-877-stop ibc. On social media? Join us on Facebook and Twitter (@IBCResearch).

About Milburn Foundation®

The Milburn Foundation is a private foundation that structures creative strategic partnerships with both public charities and for-profit companies to drive philanthropic innovation for breast cancer research and more. The Milburn Foundation was born out of a father’s love for his daughter when she was diagnosed with Triple Negative Inflammatory Breast Cancer. Milburn is the proud recipient of the 2016 Susan G. Komen Reach Award (for fundraising innovation). Organizations interested in inventive Corporate Social Responsibility (CSR), Venture Philanthropy, Impact Investing or Activist Philanthropy initiatives should contact us to learn more about how our donations can be coupled with a strategic partners’ objectives to amplify impact. Find out more or contact us by visiting TheMilburnFoundation.org.