IBC Consortium Translates Research Into Action

Inflammatory breast cancer survivor Charlotte Finley said when she first learned of her diagnosis she was "prepared to die." However, she said, "the storm clouds lifted" when her physician Jeremy Force, MD (right) met with her and said "we got this."Inflammatory breast cancer survivor Charlotte Finley said when she first learned of her diagnosis she was "prepared to die." However, she said, "the storm clouds lifted" when her physician Jeremy Force, MD (right) met with her and said "we got this."The Duke Consortium for Inflammatory Breast Cancer (IBC) recently hosted its first-ever annual meeting — “Engaging Our Community in IBC Research and Awareness.” Held in partnership with the IBC Network Foundation, Duke Cancer Institute, Duke, Duke University School of Medicine, Department of Surgery and Duke Department of Pathology, the Feb. 28 symposium drew more than 150 physicians, researchers, nurses, patient advocates, caregivers and patients. Local government officials also attended, including a special guest – the mayor of Durham — who addressed the group.  

The Duke Consortium for Inflammatory Breast Cancer is a multidisciplinary center focused on understanding, preventing, and treating inflammatory breast cancer — a relatively rare, highly aggressive and often misdiagnosed type of breast cancer.

“Our goal for our consortium and for this meeting is to work together to identify ways that Duke University and the Duke Cancer Institute can partner with you all to develop a strategic plan for increasing IBC awareness research output and above all to improve patient care,” said consortium program director Gayathri Devi, PhD, opening the meeting.

Executive director of Duke Cancer Institute Michael Kastan, MD, PhD, commended Devi and the rest of the steering committee — consortium clinical director Paul Kelly Marcom, MD; chief of Breast Surgery E. Shelley Hwang, MD, MPH; associate director of clinical research for the DCI Breast Program Neil Spector, MD; and director of the DCI Office of Health Equity and Disparities Nadine Barrett, PhD — for “creating a multi-disciplinary approach to a very challenging disease.”

Compared with other types of breast cancer, inflammatory breast cancer has a unique presentation and tends to be diagnosed at a younger age. African Americans are disproportionately at a higher risk of developing aggressive inflammatory breast cancer with poor outcomes. 

“With Durham being a county of almost 40 percent African Americans, and it being part of the Duke community, inflammatory breast cancer is particularly important to us,” said Kastan. 

Mayor of Durham Steve Schewel, PhD, who received his PhD in education at Duke, noted that in recent years Durham has had one of the highest incidences of breast cancer in the state. He pointed out that racial disparities exist not only in housing, neighborhood safety, incarceration rates, and employment, but in nutrition and health as well.

“Because of these longstanding disparities in these many areas it’s crucial that we view all of our work here in Durham through a racial equity lens, so I’m especially pleased to be here today to hear you are taking on a disease that disproportionately effects African American women in Durham,” said Schewel, who unveiled the consortium's local outreach campaign 'Connect NC for IBC.'. “Thank you.”

Marcom opened the clinical management section of the program with an overview of DCI’s Breast Cancer Program and challenges in IBC treatment. Before ceding the floor to clinicians from the IBC international consortium, MD Anderson Cancer Center and Dana Farber Cancer Institute, he announced the establishment of a new IBC-focused clinic — on Tuesdays at Duke Cancer Center — to be led by Jeremy Force, DO (medical oncology), Oluwadamilola "Lola" Fayanju, MD, MA, MPHS (surgical oncology), and Gita Suneja, MD (radiation oncology).  

Two IBC survivors gave testimonials about their treatment at Duke and other patients in the audience had the opportunity to pose questions to the speakers. 

Devi, who was presented with a check for $100,000 from the IBC Network Foundation (https://www.theibcnetwork.org)  to support her team’s research developing models to characterize inflammatory breast cancer, addressed the unique aspects of IBC progression in the symposium session on research challenges.  

“We need to understand the biology, what is unique about aggressive breast cancers, including IBC,” said Devi. “We need to understand why some patients develop metastatic disease, how the diagnosis can be made easier, and how to ensure that there’s better reporting, identifying the patients in the primary stages for improved clinical outcomes.”