Survey: Most women unaware of the signs of an aggressive form of breast cancer

October is National Breast Cancer Awareness Month, and a new national survey commissioned by The Ohio State University Comprehensive Cancer Center—Arthur G. James Cancer Hospital and Richard J. Solove Research Institute (OSUCCC—James) found that most women are unaware of the unusual symptoms of a particularly aggressive and deadly form of the disease known as inflammatory breast cancer.

The survey—which was conducted online among 1,100 U.S women ages 18 and older—revealed that while 4 in 5 women (78%) recognize a lump in the breast as a sign of breast cancer, less than half of women would flag redness of the breast (44%), pitting/thickening of the skin (44%), or one breast feeling warmer or heavier than the other (34%) as possible symptoms of breast cancer; specifically, the rare and highly aggressive form of the disease known as inflammatory breast cancer.

The disease can occur in any part of the breast and in any molecular sub-form of the disease. It is often misdiagnosed because it mimics symptoms similar to a breast infection. Those signs include:

  • an orange peel-like texture or dimpling of skin;
  • feeling of heaviness;
  • tightening of the skin;
  • engorgement of the breast; and
  • infection-like redness.

“Women should know that radical changes to the breast are not normal, and breast self-exams are still very important. Some 50% of inflammatory breast cancers are diagnosed as stage 4 disease,” said Dr. Ko Un Park, a surgical oncologist who leads a new Inflammatory Breast Cancer Program at the OSUCCC—James’ Stefanie Spielman Comprehensive Breast Center. “It is important for women to recognize changes in both the appearance and feel of their breasts so that changes can be discussed quickly with a physician.”

She notes that even in the medical community, physicians and providers are not accustomed to thinking about a red breast as a sign associated with inflammatory breast cancer because it is such a rare disease.

“Although inflammatory breast cancer only represents 1% to 5% of all breast cancers in the United States, it is a sneaky disease and challenging to diagnose. It is critical that clinicians have a high level of familiarity with its subtle signs and be prepared to take immediate action to avoid belated diagnosis,” Dr. Park said.

Inflammatory breast cancer clinic launched

With leadership from Park and breast radiologist Dr. Amy Kerger, the OSUCCC—James has created an inflammatory breast cancer multidisciplinary team that includes surgical, medical and radiation oncologists, as well as breast radiologists, plastic/reconstructive surgeons, physical therapists and nurses. The effort has led to implementation of a formal best-practice clinical decision tree to help the OSUCCC—James medical team triage and rapidly respond to potential inflammatory breast cancer cases.

“Our goal is to push these patients to the front of the line, rapidly mobilizing a treatment plan so that therapy can begin as soon as possible,” Dr. Park said. The team is working with primary care and obstetricians/gynecologists to bring more awareness of this disease and the nuances of diagnosing and treating it.

Survey methodology:

This survey was conducted online within the United States by The Harris Poll on behalf of The Ohio State University Wexner Medical Center from September 22-26, 2022, among 2,044 U.S. adults ages 18+ among 1,100 of whom are women. The sampling precision of Harris online polls is measured by using a Bayesian credible interval. For this study, the sample data is accurate to within +/- 2.8 percentage points using a 95% confidence level.