Most breast cancer awareness campaigns have long encouraged people to lift an arm and feel for a lump in their chest. But sometimes a lump is not the defining characteristic of the disease. Inflammatory Breast Cancer (IBC) is a rare and aggressive type of cancer that appears much differently than other types of breast cancer. It develops quickly with redness or discoloration, swelling, skin thickening or dimpling, nipple changes, or changes in the size or shape of the breast. A mass is not a common characteristic of IBC, and it may not even show up on a mammogram.
The stakes are high when symptoms are missed: it’s an invasive disease with a five-year survival rate of about 40%. Although IBC accounts for only 1-5% of breast cancer diagnoses, it is estimated to be responsible for up to 10% of breast cancer deaths in the United States due to its aggressive nature and tendency to present at advanced stages.
“We were hearing the same message in different ways from patients: people are taught to look for a breast lump, but they are not always taught that other rapid breast changes can also be concerning,” said Anh Tran, PhD, MPH, associate professor in the Department of Family Medicine and Community Health.
In many instances, by the time IBC is diagnosed, it has already spread to nearby lymph nodes and metastasized to distant parts of the body. Duke researchers are now advocating to expand public health campaigns to include the warning signs and risk factors of IBC, in addition to lump detection.
“We do not want people to become alarmed by every breast change. But we do want people to know that some changes deserve attention even when there is no lump,” Tran said.
This effort comes after the results of a public online survey revealed that while nearly 80% of adults surveyed had heard of the disease, many did not know the signs that would prompt medical attention. In contrast, more than 62% of respondents identified a lump as a symptom.
“That gap suggests that traditional breast cancer awareness has succeeded in teaching people to look for a lump but may leave them less prepared to recognize cancers that present differently,” Tran said.
She worked alongside Gayathri Devi, PhD, adjunct professor of surgery and president of the Inflammatory Breast Cancer International Consortium, Alexandra Bennion, a Duke University graduate, former research assistant and co-author on the study, and community advisory board members, to create the 18-question online survey.
Eight questions focused on awareness, symptom recognition, and breast health, and 10 questions focused on knowledge of risk factors. But all were informed by patient experiences.
The team partnered with two Duke oncology nurse practitioners who had experience in caring for people with IBC to conduct interviews with 10 survivors willing to share their stories. Those narratives helped shape the wording and structure of the survey questions.
“We wanted to use language that patients could immediately understand and recognize from their own experience, while still capturing the clinical findings we were trying to assess,” Tran said. It’s why they changed “Peau d’orange,” which means orange peel in French, to ‘pitted appearance on the skin of the breast, similar to an orange peel.’”
“Patients reminded us that educational materials and clinical conversations need to reflect what people actually notice in their bodies, not just the terminology clinicians use,” she said, noting that it was a small but important change to the survey.
After collecting survey responses, the researchers created a unique scoring framework to rate participants' knowledge of inflammatory breast cancer symptoms and risk factors. Greater awareness of the disease, particularly its hallmark symptoms, resulted in higher scores.
“We did not want to create an instrument that simply tested whether someone knew medical terminology. We wanted to understand whether people could recognize the kinds of changes they might actually see or experience,” Tran said.
Among the 177 U.S. adults surveyed as part of the study, nearly 8 in 10 respondents were aware of IBC, but only 50% recognized skin thickening and nipple inversion as symptoms. Less than 40% identified orange dimpling of the skin, and changes in breast size or shape as an indicator of the illness. Just 36% recognized breast redness as a sign.
“Our research suggests that knowing the name of a disease is not enough. Rather, we should spread awareness of warning signs and risk factors. Effective cancer awareness must help people recognize what they should actually be looking for,” Tran said.
It’s an insight supported by patient interviews. One patient recalled her breast itching for months before diagnosis. “She wondered whether seeing symptoms like that listed on forms before imaging or medical visits might have helped her recognize the change as concerning sooner,” Tran said. “That made the awareness gap we were measuring very tangible.”
The team is expanding the scope of their research to better understand IBC awareness among health care professionals. Earlier studies conducted by the team revealed that many clinicians have had limited experiences with IBC due to its rarity but welcomed the opportunity to learn. The team is currently examining these issues in rural clinical settings and plans to test the survey framework in larger and more diverse populations to help guide future public education efforts.
“Ultimately, the goal is to help both the public and health professionals recognize IBC sooner, so that people experiencing concerning symptoms can be evaluated and treated as quickly as possible,” Tran said.
This work was partially funded by the IBC Network Foundation, a longtime partner of the Duke Consortium for Inflammatory Breast Cancer.