Inflammatory Breast Cancer Is Often Missed, But May Now Be Easier To Diagnose

Ryan Tamargo, NP, AONCP

The launch of a new, easy-to-use online tool, developed through Susan G Komen, the Milburn Foundation and the Inflammatory Breast Cancer Research Foundation, seeks to improve the rate of accurate inflammatory breast cancer (IBC) diagnoses.¹

“The tool is great. It is really straightforward,” Ryan Tamargo, NP, AONCP, a nurse practitioner with the IBC program at the Dana-Farber Cancer Institute, told Oncology Nursing News. “There are pictures, which make it very helpful in being able to see variations in IBC patients, because not everyone is going to have that ‘orange peel’ appearance. The tool can be helpful in going step-by-step [through] what you are seeing and gives you a score at the end.”

Unfortunately, IBC is often mistaken for a breast infection because it can present without a breast lump, and it can be hard to see on a mammogram—approximately 30% of patients with IBC receive their first diagnosis when their disease is stage IV. However, the new Inflammatory Breast Cancer (IBC) Scoring System online tool, which is available for free on Komen’s website, offers a quantitative scoring system to standardize the clinical, pathologic, and imaging features associated with IBC.²

Sharone Elmore-Anderson

Oncology Nursing News met with Tamargo and Sharon Elmore-Anderson, a patient advocate, to better understand IBC and the problems with diagnosing and treating it. As Tamargo explained, and Elmore-Anderson has experienced, not only is IBC often misdiagnosed, but awareness surrounding this disease type is poor. The goal of this new diagnostic tool is to help not only raise awareness about IBC, but make it easier for providers, including primary care providers, to recognize the signs and make the correct diagnosis.

Inflammatory Breast Cancer Misdiagnosis

According to Tamargo, if providers are not thinking IBC when they see a red swollen breast, it can easily be missed.

“What can be tricky about it is that sometimes there is no mass, and the symptoms can be very progressive [so] it can look like an infection to primary care providers or providers in the community,” she said, noting that often, patients meet with her after having been on antibiotics for a while to treat their redness or swelling. The antibiotics may appear to work at first—but after a while the symptoms will worsen, and this is the time point when she often meets her patients. Women also may often be told that their symptoms are mastitis, or something related to breastfeeding.

Elmore-Anderson had never felt any lumps in her breasts. When she began experiencing heart palpitations, she went to the emergency department. After running some tests, they released her and told her to follow up with her cardiologist. Later that week, while preparing for an unrelated knee surgery, she went to her orthopedic doctor, who wanted to see her medical records from the emergency department. When looking at those records, the orthopedic doctor informed her that she had enlarged lymph nodes and encouraged her to get it checked out.

She made an appointment with her obstetrician, who looked at her records and conducted an exam. He asked her about a small, thumb-sized rash, that was in the crease of her breast—she had never seen it before. He ordered a mammogram.

The results of the mammogram were considered “suspicious” but did not immediately show breast cancer. Her doctor preceded to order an ultrasound. When the ultrasounds results were unclear, he ordered a biopsy.The biopsy results showed stage IV IBC.

“I was shocked because I felt fine at that point,” she recalled. “I felt like I was failed at the emergency room because I was stage IV, and nobody read the results. Nobody had even told me that I had enlarged lymph nodes.”

“The doctor that I went to was my obstetrician doctor and he delivered both my children, [so we] had a relationship,” she shared. “I think that's one reason why he took things a step further, [but imagine] if he didn’t read the results from the emergency room.”

How do the symptoms differ from other breast cancers?

Tamargo explained that the symptoms are fast-acting and will progress within a 6-month span. Moreover, because there is not always a mass, event though patients may notice changes, their providers might not think of cancer.

“Women typically will have redness—greater than a third of the breast will have some erythema or some redness, and there can be warmth, swelling, or that orange peel appearance,” Tamargo said, explaining that the symptoms vary. “But not everyone is going to have those [symptoms]. The classic Hallmark with IBC patients is that some of these symptoms are [developing] in under 6 months. It is very quick.”

Elmore-Anderson said she would not have made too much attention to her rash if she had noticed it on her own.

“It was as big as my thumbnail and it had dimpling in it like an orange peel, [but] I never thought that little thing could have been an indication of anything,” she said.

A Tool To Diagnosis IBC

According to Elenmore-Anderson, the health care community needs to be more aware of IBC.

“Inflammatory breast cancer needs a lot of attention,” she said. “I was lucky enough to get a doctor that went beyond.”

“Since I became a patient advocate, I have talked to a lot of patients—and I have talked to family members whose loved one had passed on because the signs were missed. They would have enlarged breasts and [providers] would treat them for rashes and say, ‘You just have an inflamed breast, put this cream on and you will be fine.’”

Tamargo agreed that raising awareness at the primary care provider level is a key point in improving time to treatment for these patients.

“As the nurse practitioner for [the] Dana-Farber Inflammatory Breast Cancer Program, I speak with our patients as [their] first point-of-contact,” Tamargo said. “I hear from a lot of women that had sought care locally or through their primary care or gynecologist first, because they were seeing some breasts changes, and [went] through that process of being on antibiotics [before] they came to us.”

Unfortunately, in Tamargo’s experience, young woman with metastatic IBC usually have treatment delays because they are told that their symptoms are related to breast feeding. “It is heart-breaking to meet with a patient who had a significant delay in diagnosis,” she said.

Although she made it clear that this new tool will not be the only thing used to diagnosis someone, she is optimistic that it will help raise awareness and make diagnoses easier for clinicians.

“This tool will help prevent delays in getting patients treated, because the best thing for them to prevent becoming metastatic is getting treatment with chemotherapy as soon as possible.”

References

1. New Online Tool Available to Help Health Care Providers Identify a Hard to Diagnose Breast Cancer. Susan G Komen for the Cure. News release. September 12, 2023. Accessed September 12, 2023. https://www.prnewswire.com/news-releases/new-online-tool-available-to-help-health-care-providers-identify-a-hard-to-diagnose-breast-cancer-301924165.html
2. Jagsi R, Mason G, Overmoyer BA, et al. Inflammatory breast cancer defined: proposed common diagnostic criteria to guide treatment and research. Breast Cancer Res Treat. 2022;192(2):235-243. doi:10.1007/s10549-021-06434-x