Breast cancer researchers have developed a new tool that may be able to help doctors better diagnose inflammatory breast cancer (IBC).

The tool was developed through a collaborative effort between Susan G. Komen, the Inflammatory Breast Cancer Research Foundation, and the Milburn Foundation, which brought together a team of leading breast cancer experts including clinicians, researchers, and IBC patients. The novel tool and the findings of the analysis have been recently published in Breast Cancer Research and Treatment.

“IBC has historically been difficult to diagnose and no changes to diagnostic approach have been made since the 1960’s. It is a rare and aggressive type of breast cancer that develops rapidly and can easily be confused with a breast infection and often goes underdiagnosed or misdiagnosed,” says Reshma Jagsi, MD, DPhil, lead author, Komen Scholar and radiation oncologist.

Before the development of this tool, IBC lacked a formal, objective medical definition, and diagnosis was often delayed, misdiagnosed, or missed. IBC usually presents as swelling or redness of the breast, and not a lump, so it can be missed on a mammogram.

As the team began their work, it became evident that without a clear definition of IBC that included all the characteristics of this complicated disease, accelerating research would continue to be a significant challenge.

“If you want to study a disease, you have to ask, ‘What causes the disease and is this treatment better than that treatment?’ It’s harder to answer those questions if you haven’t clearly defined the disease,” says Kathy Miller, MD, senior author, Komen Scholar and medical oncologist. “It sounds so simple, but having a diagnosis really is the first step toward tackling the problem.”

The group identified “defining characteristics”—including clinical, pathologic and imaging features—of IBC that led them to develop a quantitative scoring system for diagnosis. The system, or tool, is intended to increase diagnostic accuracy, predict outcomes, guide treatment decisions, and inclusion criteria for clinical trials.

This tool will also enable researchers to study the biology of IBC and make discoveries to advance progress towards personalized care for all breast cancer patients.

“Komen has been able to see further into the future about how this definition isn’t just about writing something in a dictionary. This is about something that is essential to undergird future research,” says Jagsi. 

IBC is aggressive and can spread quickly, resulting in approximately 30% of patients being diagnosed at stage IV, or with metastatic disease, meaning their breast cancer has already spread to other parts of their body.

Susan G. Komen, the Inflammatory Breast Cancer Research Foundation and Milburn Foundation raised more than $1.4 million in a fundraising campaign last year to support the IBC cohort and the research that was recently published.

“With aggressive breast cancers like IBC, patients need more treatment options, and they need them now. This collaboration is helping us get closer to finding more effective treatments for a type of breast cancer that is difficult to diagnose and treat,” says Victoria Wolodzko, senior VP of Mission at Susan G. Komen.

Susan G. Komen, the Inflammatory Breast Cancer Research Foundation and Milburn Foundation continue to raise funds to support ongoing research studies to validate the new scoring system.

The next step is to perform further studies to validate the scoring system.