Susan G. Komen has been leading a group of patient advocates, clinicians and researchers to advance our understanding of inflammatory breast cancer (IBC). IBC is an aggressive type of breast cancer that is often not seen on a mammogram because of its rapid onset, and it often spreads throughout the breast or may show up with signs of inflammation. IBC typically presents as swelling and redness of the breast and not as a lump.
IBC has lacked a formal, objective definition making diagnosis frequently delayed or missed. As a result, approximately 30 percent of patients are diagnosed at stage 4, or with metastatic disease, meaning their breast cancer has already spread to other parts of their body and cannot be cured. Without a formal, objective definition, patient care and research suffer, diagnosis remains subjective, and treatments vary.
Komen, along with the Inflammatory Breast Cancer Research Foundation and Milburn Foundation, saw the need to bring together the brightest minds to make progress in diagnosing and treating IBC. The co-leaders of the group, Dr. Kathy Miller and Dr. Reshma Jagsi, spoke with Komen about the findings and opportunities to standardize IBC diagnosis.
Komen: Why is it important to determine a definition for IBC?
Miller: When you study a disease you may have a basic question such as, “What causes this disease?” or a clinical question such as, “Is this treatment better than that treatment for this disease?” It’s hard to answer those questions if you clearly haven’t defined the disease. It sounds so simple but having a clear diagnosis is really the first step toward addressing the problem or question
Jagsi: There are clinical diagnostic criteria that have been defined in the AJCC Cancer Staging Manual that we as clinicians all use. Some criteria are articulated in this manual, but there are nuances that are in the eye of the beholder. We talk about redness and swelling and how much of the breast is affected and how quickly it develops, but there is a lot of ambiguity that remains, and we would prefer to have a clearer definition.
Komen: How is Komen-supported research going to help advance the study of IBC and the development of treatments for IBC?
Jagsi: Komen has been invaluable in bringing together the experts leading scientific research in this area – from the clinical trialists to the laboratory researchers – and then partnering them with our patient advocates and the members of the community who have expertise in communicating about this issue. Bringing everyone together is critical to reach an expert consensus on how to lay out the agenda for research in IBC. Komen is really visionary in seeing how bringing together experts for consensus on how to make this diagnosis isn’t just about writing a dictionary definition but an essential precondition to supporting research that improves patient outcomes.
Komen: How does defining IBC help improve its diagnosis?
Miller: We need to identify people who have inflammatory breast cancer, but whose presentation is not as dramatic or flagrant as the grossly swollen, clearly red, clearly thickened classic pictures of inflammatory disease. We recognized that there is a spectrum of inflammatory breast cancer. It still develops and progresses over a short period of time. It still has a lot of those hallmarks that we mentioned previously, but where we see misdiagnosis, I think are in patients where the inflammatory characteristics are more subtle. Redness can be harder to detect in women of color and different ethnic backgrounds, so it’s important to broaden people’s consciousness, globally. It is important to broaden their consciousness about the spectrum of inflammatory breast cancer so clinicians recognize its more subtle forms, as well as the really obvious forms.
Komen: Your group has put forward some important findings to move the field forward. Where do things go from here?
Miller: This is our first pass at a definition for IBC. It marks a first step to guide basic research. It is also a step toward helping patients get the proper diagnosis and the proper care. We are now actively working to validate this definition with a new group of patients recently diagnosed.
Jagsi: In the course of doing our work, we came up with a proposed scoring system for diagnosis. We’ve included some very nice photographs for guidance as well. The hope is to improve consistency when diagnosing IBC. Then we need to work to validate our proposed scoring system.
*Jagsi, M.D., D.Phil., is the Newman Family Professor and Deputy Chair of the Department of Radiation Oncology, and the Director of the Center for Bioethics and Social Sciences and Medicine at the University of Michigan.
*Miller, M.D., is a professor of oncology and medicine for the Indiana University School of Medicine in the Department of Medicine, Hematology and Oncology Division.
