On November 16, 2020 A partnership between Susan G. Komen, the Inflammatory Breast Cancer (IBC) Research Foundation and the Milburn Foundation reported that it has raised nearly $1 million for more research into inflammatory breast cancer – an aggressive subtype of breast cancer that is challenging to diagnose and treat – and other important programs (Press release, Susan G Komen, NOV 16, 2020, View Source [SID1234571163]).

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IBC can be missed on a mammogram because it usually doesn’t present as a lump in the breast. Instead, this less common type of breast cancer typically presents as swelling or redness of the breast and can spread quickly. IBC may first be mistaken for an infection or mastitis because of symptoms such as redness and swelling and the frequent lack of a breast lump – all of which can lead to a delay in diagnosis. Patients diagnosed with IBC are diagnosed with later stages of the disease, in part because IBC presents in a different way and is harder to detect. About 30 percent of patients are initially diagnosed with Stage IV, or metastatic disease, which means their breast cancer has already spread to other parts of their body.

Current knowledge about IBC is limited because clinical trials for new breast cancer therapies often restrict the participation of IBC patients, and for those that do allow enrollment, patients’ outcomes are combined with non-IBC patients’ outcomes.

The three organizations have focused on addressing key needs in this understudied form of breast cancer to advance treatments. Their efforts to identify the path to move the field of IBC research forward confirmed researchers and clinicians have a need for a clearer diagnosis and definition of IBC. The current diagnostic criteria have not made significant progress since the 1950s and the current definition of the disease causes patients and research to suffer, resulting in subjective diagnoses and varying treatments.

As part of the work, more than 30 IBC experts across the country have been collaborating on a formal definition of IBC and presented their approach during the 2019 American Society of Clinical Oncology (ASCO) (Free ASCO Whitepaper) Annual Meeting and San Antonio Breast Cancer Symposium. Their work and definition are expected to be published soon in a major oncology journal.

The three organizations have raised $3.4 million to date, which has supported critical programs and research into better understanding IBC. The ongoing work is part of Komen’s mission to save more lives by understanding and treating less common forms of breast cancer.

"We’ve made great progress in identifying and treating breast cancers over the years, but there is still work to do to fully understand and treat aggressive cancers including IBC and metastatic breast cancer, the most advanced stage of breast cancer," said Paula Schneider, President and CEO of Susan G. Komen. "With aggressive breast cancers, patients need more treatment options and they need them quickly. This ongoing partnership is helping us get closer to finding more effective treatments for types of breast cancer that are difficult to treat."

"Since our start over two decades ago, ‘patient-centered’ research has been the buzz word. Our ground-breaking partnership has redefined and initiated true ‘patient-driven’ research to address diagnosis and treatment of Inflammatory Breast Cancer," said Ginny Mason, Executive Director of the IBC Research Foundation. "It’s past time to do more about a disease that continues to steal so many lives."

"It takes true leadership to see beyond the status quo and take bold action to resolve a decades-long issue in IBC diagnosis," said Bryon Davis, CEO of the Milburn Foundation. "This work is pioneering a ‘power to the patient’ movement that connects the dots between worthwhile existing research and a roadmap to successfully coordinated future initiatives."