By Rachel Ford, an Inflammatory Breast Cancer Survivor & Advocate

Introduction

Inflammatory Breast Cancer (IBC) is a rare and aggressive subtype, comprising only about 1–5% of all breast cancers in the U.S.. Yet, it claims a disproportionately high share of lives. Unfortunately, even subtle improvements like code inclusion won’t solve deeper issues, especially around diagnosis and treatment.

The New ICD-10 Codes

Effective October 1, 2025, the ICD-10-CM system now includes three specific codes for IBC:

C50.A0 — Malignant inflammatory neoplasm of unspecified breast

C50.A1 — Malignant inflammatory neoplasm of the right breast

C50.A2 — Malignant inflammatory neoplasm of the left breast

This long-awaited update arose from persistent advocacy by groups such as Susan G. Komen, IBCRF, and the Milburn Foundation, finally granting IBC its own classification and drawing necessary attention.

These codes mark a key achievement in recognition:

• Formal documentation helps clarify patient records and enables better insurance and clinical communication.

• Researchers now have a more straightforward path to identify and study IBC cases.

• Symbolically, it validates the experience of patients who’ve long needed their disease taken seriously.

Why It Still Falls Short

1.  Diagnosis Isn’t Automatically Improved

My diagnosis came sooner than most because I also had Invasive Ductal Carcinoma (IDC) and Invasive Ductal Carcinoma In-Situ (DCIS) tumors, which offered the pathologists something concrete to recognize. That’s not true for most IBC patients, whose symptoms, like

redness, swelling, or peau de orange skin, often mimic benign conditions like infections or dermatitis. A billing code can’t fix that. Most women with Inflammatory Breast Cancer will not present with a “lump” or tumor, which makes it easy to identify that they have cancer and often leads to later diagnosis and more disease progression.

2.  Treatment Still Fails Too Many

A recent study published in JAMA Network Open revealed that a staggering 74.9% of women with nonmetastatic IBC did not receive guideline-concordant care—meaning only 25.1% received the complete recommended regimen of neoadjuvant systemic therapy, modified radical mastectomy without immediate reconstruction, and postmastectomy radiotherapy. 1. JAMA NetworkPMC This aligns almost exactly with my experience: I thought I was following the correct treatment path however, critical elements were missed or not appropriately addressed.

Receiving guideline-concordant care significantly improved survival outcomes—yet the vast majority aren’t getting it. 2. PMCThe ASCO Post

3.  Awareness, Access & Equity Gaps Remain

Proper treatment requires providers to recognize IBC and assemble multidisciplinary teams quickly. Many clinicians, nurses, surgeons, and social workers aren’t trained to suspect IBC, and even when codes are in place, knowledge and resources lag. This is especially true in

non-major cancer centers. Without wider provider education and access to specialists, these codes are still symbolic. In addition, if the knowledge of Inflammatory Breast Cancer is not widespread, how will providers know how to code it correctly moving forward, or even when to apply it?

4.  Previous Patients Remain Unrecognized

In the future, having these codes in place will ensure that future Inflammatory Breast Cancer patients are counted, but the codes will not be retroactive; however, this means that the lives lost and the people currently in IBC survivorship will not be counted. Future numbers will be missing a significant population of IBC survivors, thrivers, and losses in their reports.

5.  IDC-10 Codes Don’t Fund Research

The most critical shortcoming of IDC-10 codes is that while these new codes help track and identify IBC cases, they do not generate funding or fuel the studies that are desperately needed. Research is the key to saving lives! Only through dedicated clinical trials, a better understanding of IBC biology, and the development of novel treatments can survival rates improve. Without substantial investment in research, codes alone cannot change outcomes.

Conclusion

Introducing C50.A0, C50.A1, and C50.A2 is a landmark step in legitimizing Inflammatory Breast Cancer in healthcare systems. But if it’s to translate into real progress, it must be part of a broader push; funding, education & awareness, equity, access, and advocacy combined with accurate coding.

As someone whose path included many missteps despite having a quick cancer diagnosis thanks to Invasive Ductal Carcinoma and Invasive Ductal Carcinoma In-Situ and thinking I was adequately treated, I’m part of that disturbing majority. We can push for more, and we must, or the door remains open but empty.