Inflammatory breast cancer (IBC) is rare, aggressive, and often misdiagnosed — but a big change is coming that could help patients get the right care faster. Starting October 1, 2025, doctors will be able to use three new medical codes created specifically for IBC.
These codes are part of the ICD-10-CM system, which is used in medical records, insurance claims, and research. Having specific codes for IBC will make it easier for healthcare providers to correctly diagnose the disease, get insurance approval for treatment, and track how it affects different people.
“This is the culmination of nearly a decade of leadership… to bring experts together to define IBC, increase diagnosis accuracy and advocate for the tools health care providers need to support patients,” said Victoria Smart, senior vice president of Mission at Susan G. Komen®.
IBC is not like most breast cancers. Instead of starting as a lump, it shows up as changes in the skin of the breast — swelling, redness, warmth, or thickening. It can spread quickly, sometimes in just weeks.
“It’s a bit more challenging to diagnose… because it presents differently than other breast cancers,” Glendon Zinser, Sr. Director, Scientific Strategy & Programs at Susan G. Komen®, tells BlackDoctor.org. “That can be more difficult to see in darker-skinned individuals. In whites, it’s going to be easier to see that reddening… In Blacks, it may not be as obvious. And because IBC is so invasive and aggressive, the timing of diagnosis and how quickly you get on treatment is critical.”
Unfortunately, these symptoms are sometimes mistaken for an infection, rash, or skin condition — delaying the right treatment. And before these new codes, IBC patients were often lumped under a generic “breast cancer” code that didn’t reflect the disease’s unique challenges.
The push for these codes started years ago. In 2016, Susan G. Komen®, the Inflammatory Breast Cancer Research Foundation (IBCRF), and the Milburn Foundation formed the IBC Collaborative — a group of doctors, researchers, and patient advocates working together to improve diagnosis and treatment.
One of their first projects was creating an IBC Scoring System — a checklist doctors can use to decide if a patient’s symptoms might be IBC. “We set up a scoring system, and then with experts and patient advocates… determined what those criteria need to be to help diagnose IBC better,” Zinser shares.
The scoring tool became available online in 2023 and has been used more than 5,700 times in over 100 countries. Once it proved useful, the group had the evidence they needed to ask the Centers for Disease Control and Prevention (CDC) to create official diagnostic codes for IBC.
The new codes (C50.A0, C50.A1, C50.A2) will:
Know the signs: IBC may cause:
Speak up: If your symptoms match IBC, ask your doctor to consider it as a possibility and mention the new diagnostic codes.
Keep records: Save any imaging results, lab work, and photos of changes in your breast. This can help your healthcare team make a faster, more accurate diagnosis.
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