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®.
Why IBC Is Often Missed
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.
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“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.
How the New Codes Came to Be
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.
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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.
Why the Codes Matter for You
The new codes (C50.A0, C50.A1, C50.A2) will:
- Help doctors diagnose faster and more accurately. If “inflammatory breast” is entered in the system, the correct code will pop up.
- Reduce delays in treatment. Insurance companies will have the right information up front, so claims can be approved faster.
- Improve research. More accurate coding means researchers can track how common IBC is, who is most affected, and how people respond to treatment. This could also make it easier for patients to qualify for clinical trials.
“Even the delays that may have occurred with getting the right treatment — that’ll be reduced,” Zinser adds. “This should help get people the care they need more quickly… and ultimately have better success for all patients who are diagnosed with inflammatory breast cancer.”
What You Can Do
Know the signs: IBC may cause:
- Redness or a rash on the breast
- Swelling or sudden size change
- Skin that feels thicker, heavier, or warmer
- Tenderness or itching
These changes can happen quickly — don’t wait to get them checked out.
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.
What Clinicians Should Remember
- Use the IBC Scoring System to evaluate suspicious symptoms, especially in patients without a lump.
- Be aware of skin-tone differences. Redness can be harder to see in darker skin; pay close attention to texture and swelling.
- Use the new codes (C50.A0, C50.A1, C50.A2) to ensure proper documentation and faster patient access to treatment.
- Act fast. IBC often requires a combination of chemotherapy, surgery, and radiation — starting quickly can make a major difference.
“This is a huge win for all patients,” Zinser concludes. “Now we’re able to capture and code for inflammatory breast cancer specifically from the start… This will ultimately advance our understanding of biology, the research, as well as patient care.”
