Inflammatory breast cancer (IBC) is an aggressive breast cancer that develops rapidly and often does not present as a lump, making it harder to spot on a mammogram. Instead, people notice symptoms such as a rash or swelling, which can easily be confused with a breast infection. IBC can progress rapidly and is often at an advanced stage by the time it’s diagnosed, resulting in poorer prognosis.
It’s a problem that resonates deeply with Bryon Davis, president and CEO of the Milburn Foundation®. His grandfather founded the Milburn Foundation to support IBC and triple negative breast cancer research after his daughter, Kathy Milburn-Williams, was diagnosed with triple negative IBC in 2007.
“She was a pediatric nurse for 20 years and had obviously built up an enormous amount of respect for medical professionals,” Bryon said. “But in that time, she also learned that doctors weren’t always right. When her doctor said not to worry about the rash she found on her breast, she intuitively said, ‘No, there’s something wrong here.’
“She advocated for herself and as a nurse was able to arrange for her own biopsy,” Bryon continued. “She had triple negative IBC and started a very aggressive treatment protocol. She credits advocating for herself as the reason she’s alive today.”
Like Bryon, Ginny Mason understands firsthand the challenges of being correctly diagnosed with IBC. When her husband noticed a change in her breast, Ginny immediately scheduled an appointment with her doctor. But it took four months for her to be correctly diagnosed with IBC.
As a 28-year IBC survivor, Ginny has dedicated the last 25 years of her life to IBC patient advocacy. As executive director of the Inflammatory Breast Cancer Research Foundation (IBCRF), she leads the mission to improve the lives of people diagnosed with IBC through fostering innovative research, educating the breast cancer community and advocating for people with IBC.
Collaboration: A Powerful Force Against IBC
While the Milburn Foundation had partnered with Susan G. Komen® and IBCRF independently for many years to support research grants focused on triple negative breast cancer and IBC, it wasn’t until 2016 that the three organizations joined forces to accelerate IBC research. Komen and the Milburn Foundation launched their first-ever matching gifts campaign that year.
“The campaign grew out of our positive relationship and a shared desire to work together in creative ways to help end breast cancer,” Bryon explained. “And it really blossomed. Our first matching campaign raised over $400,000 in 30 days.”
The two organizations decided to use the funds to accelerate IBC research, and Bryon suggested they invite IBCRF to join them. “I suggested we should make a collective impact initiative with all three organizations – the Milburn Foundation, IBCRF and Komen,’” Bryon explained. “The collaboration was born from that moment.”
“Tackling the challenge of IBC requires determination, collaboration and action,” Ginny said. “We decided to partner with Komen, a larger organization than IBCRF, to see if together we could find some synergy between us to drive broader awareness and more research for IBC.”
The collaboration was formally announced in October 2016. The trio of organizations, with scientific oversight by Komen, issued a request for grant applications aimed at finding new approaches to diagnosing and treating IBC, ultimately funding four IBC Innovator Grants together.
A Landmark Tool to Better Diagnose IBC
The three organizations assembled a team of more than 30 leading breast cancer experts, including clinicians, researchers and IBC patients to identify a path to move the field of IBC research forward.
The team determined that the field needed a formal, objective medical definition of IBC. No changes to the diagnostic approach for IBC have been made since the 1960s, and the current definition of the disease causes patients and research to suffer, resulting in subjective diagnoses, varying treatments, and few advances in IBC research and patient care.
The group – now called the Susan G. Komen-IBCRF IBC Collaborative, in partnership with the Milburn Foundation (the IBC Collaborative) – identified defining characteristics of IBC that led to developing a quantitative scoring system to aid in diagnosis, later published in “Breast Cancer Research and Treatment” in 2022.
Through the IBC Collaborative, Komen awarded a grant to Filipa Lynce, M.D., at Dana-Farber Cancer Institute, and Wendy A. Woodward, M.D., Ph.D., at MD Anderson Cancer Center, to validate the tool, supporting collaborative work at two of the largest IBC centers in the world.
This first-of-its-kind tool may help doctors better diagnose IBC and will also enable researchers to study the biology of IBC, making discoveries to advance progress toward personalized care for all IBC patients.
The IBC Collaborative will continue to work together in creative ways to accelerate research to advance knowledge of IBC and improve the care and outcomes for people with IBC.
“Patient advocacy is about taking an active role in defining the critical conversations that will accelerate research discoveries and drive results for patients,” Ginny said. “In our more than 20 years of work in IBC patient advocacy and research, this partnership with Susan G. Komen and Milburn is critical to push key issues forward.”
“The impressive results of our campaign have helped us reach this key milestone,” Bryon said. “Working with Susan G. Komen and the Inflammatory Breast Cancer Research Foundation, we brought together an exceptional team to help define a path forward in the fight against IBC.”
“Komen’s partnership with the Milburn Foundation and IBCRF reflects our strategic imperative to conquer all aggressive and deadly breast cancers, including IBC, so people can live longer, better lives,” emphasized Victoria Wolodzko Smart, Komen Senior Vice President of Mission.
“With aggressive breast cancers like IBC that are difficult to accurately diagnose, time is of the essence,” Victoria continued. “We need better tools to quickly and accurately diagnose patients and better treatments to ensure every patient receives the right care at the right time. This collaboration has broken down barriers to progress and is helping improve IBC diagnosis, drive scientific discoveries, and getting us closer to finding more effective treatments and saving lives.”