Finding Hope in IBC: How the IBC Network Foundation Is Changing the Story of Inflammatory Breast Cancer

In preparation for my upcoming trip to the San Antonio Breast Cancer Symposium, I wanted to take a moment to highlight why this annual conference is so important and why I’m starting with The IBC Network Foundation.

This foundation was created in 2011 by inflammatory breast cancer (IBC) survivor Terry Arnold, who was diagnosed in 2007 and quickly recognized the enormous gaps in diagnosis, support, and research. The IBC Network Foundation’s mission is to improve the lives of patients diagnosed with IBC through increased awareness, research funding, and education for both patients and providers. Arnold’s dedication to advocacy, earlier detection, and better treatment options has been unwavering. At the time of this writing, The IBC Network Foundation has raised over $1.8 million for IBC research.

What makes this foundation truly unique is its exclusive focus on IBC and its absolute commitment to research. They are a volunteer-led organization, reporting that 100% of donations go directly to research and patient support. Arnold herself serves as a volunteer for her own charity, waiving a salary in favor of maximizing every dollar for research.

Organizations like the IBC Network Foundation are desperately needed. IBC is rare, often diagnosed at stage III or IV, exceptionally aggressive, and does not present with the traditional signs of breast cancer. There is no lump. Mammograms may resemble infection. Many women are treated for mastitis or dermatitis before IBC is even considered. This delayed diagnosis combined with limited historical research create a major challenges for effective treatment.

One of the biggest hurdles for providers and patients is simple: nobody is talking about IBC.

When you look at breast cancer statistics, IBC is often barely mentioned. It accounts for only 1–5% of breast cancer diagnoses in 2024, but its behavior is far more menacing. This makes it absolutely critical to push for new studies, clinical trials, and funding so we can understand its biology, develop better treatments, and improve patient outcomes.

It’s also essential that we improve education because IBC spreads rapidly. One in three patients will already have distant metastasis at the time of diagnosis, some within weeks of seeing the first symptoms. Little is known about specific risk factors, though higher rates are seen in African American women, women with higher BMI, and certain geographic regions such as North Africa.

Since IBC behaves so differently, it requires its own research. This is where the IBC Network Foundation plays an irreplaceable role by providing grants for clinical trials, neoadjuvant treatment strategies, and studies aimed at improving survival. These grants often serve as seed funding—allowing researchers to collect the preliminary data they need to secure large-scale NIH or DOD grants.

Remember: there is no lump in IBC. It involves the skin, the lymphatic system, and deeper breast tissue. The Foundation supports studies that explore IBC at the molecular and genetic level: how it spreads, why it metastasizes so early, and which biomarkers may allow for earlier and more accurate detection. Their global research partnerships help ensure that IBC is included in major research initiatives. These efforts are critical for improving diagnostics and developing new therapies.

Education is equally important. Their website, https://theibcnetwork.org, hosts a full patient academy, treatment guidelines for providers, podcasts, articles, and an active blog. There's even an app. Their reach across social media platforms connects people with facts, support, and community. Conferences like SABCS provide a megaphone in front of the brightest minds in oncology, amplifying the message even further.

When I first met Arnold in 2014, one of the first things that struck me was the loneliness of her diagnosis; women not knowing anyone else with IBC. Today, she has built a global community—a place where women can find support, answers, and guidance for navigating second opinions and specialized care.

The IBC Network Foundation matters because without them, many of the breakthroughs in IBC simply wouldn’t exist. Their work drives research that might otherwise never happen. They are filling the pipeline with IBC-focused science that changes clinical practice, improves early recognition, and ultimately leads to better outcomes.

For patients, this means knowledge to advocate for themselves, understanding their diagnosis, and the ability to make informed treatment decisions based on the best available evidence.

It means hope.

Terry Arnold, founder of The IBC Network Foundation shares her story.