Super Patient: Terry Arnold Starts an All-Volunteer Charity to Improve Treatment for Inflammatory Breast Cancer


Terry Arnold has always identified as an advocate. “It’s my way,” she says. When she was younger, she helped establish the first rape crisis program in Fort Bend County, Texas. She is also a founding member of a center that works on missing children’s cases, often partnering with FBI task forces.

“I always joke that I was doing it all with a baby on my hip,” says Terry, who raised five children with her husband.

So it is no surprise that being diagnosed with inflammatory breast cancer (IBC), a rare and deadly disease, propelled Terry into her next chapter of advocacy work. “I was actually misdiagnosed for four months,” Terry says. “I was very fortunate to be alive at all.”

Her treatment regimen, which lasted from 2007 to 2008, was brutal but ultimately successful. Soon, her phone rang frequently with calls from other women with IBC who wanted her advice. Meanwhile, she became increasingly aware of the lack of adequate IBC education for both doctors and patients, as well as the lack of funding for IBC research.

“I hadn’t been that long out of treatment when I had gone to four funerals in six weeks, and not one of the girls was over 40, all with IBC,” Terry says. “I couldn’t take it. I reached out to organizations, but nobody wanted to talk about IBC. They’d say, ‘It’s too rare, they all die, there’s no early detection, what do you want us to do?’ ” Continue reading…