Inflammatory breast cancer survivor starts research foundation

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Terry Arnold thought it was a bug bite.

The irritated spot on her breast, however, was something far worse. It was inflammatory breast cancer (IBC) and by the time she was diagnosed she was already at stage III.

“It’s so rare it’s hard to study. It’s so fast acting it’s hard to study,” she said.

Arnold, who recently moved to Sealy from Friendswood, is one of the few who survived the rare and aggressive form of breast cancer.

“I was introduced at an event as a long-term survivor at three years out,” she said.

She is now a 13-year survivor.

“I was diagnosed in 2007 and was given two weeks to live, or at the very latest 18 months,” she said.

Arnold received treatment at the University of Texas MD Anderson Cancer Center in Houston. Just a year earlier its Morgan Welch Inflammatory Breast Cancer Clinic and Research Program received a $4 million state grant to conduct research.

Today, Arnold spearheads a foundation that helps fund that program and others across the country. The IBC Network Foundation (www.theibcnetwork.org) raises funds for IBC research at MD Anderson, Dana Farber Cancer Institute, and the Duke Cancer Institute. She has also helped start sister foundations in the United Kingdom and Australia with other forming in Japan, Canada, and Italy.

“I run it off my kitchen table laptop (computer),” she said.

Arnold said because IBC is so rare and does not have a lump that it is often misdiagnosed, especially in young women.

“Inflammatory (breast cancer) strikes women in their 30s,” she said, noting that the youngest in the United States was 19 and in Africa a girl was diagnosed at 12.

Arnold said that by the time most women with IBC get tested, they are already in stage IV and for many of them it’s too late. MD Anderson’s website talks about the dangers of the disease.

“While IBC is considered rare, attributing to only 2‐5% of all breast cancers, its aggressive nature makes it the deadliest,” the site says. “In fact, death from IBC is disproportionate when compared to all breast cancers, resulting in up to 10% of all breast cancer deaths. While the nationally quoted five-year survival rate for IBC is about 40%, advances in care are helping more patients live longer. Recent studies have shown that with the right treatment, the five-year survival rate is closer to 70% for stage III patients, and 50% to 55% for stage IV patients.

“Our multi-disciplinary program is focused on developing tools for diagnosis, identifying therapeutic approaches specifically for treatment of IBC, understanding and preventing metastases, enhancing imaging approaches to assist in detecting the disease and evaluating the effectiveness of treatment for IBC patients. Our ultimate goal is to improve survival of IBC patients.”

Arnold, 62, was 48 when she was diagnosed, which is fairly old for someone with IBC. She went through six months of chemo, followed by radiation treatment and a double mastectomy. Like most cancer patients, she wanted to learn more about what she had.

“I Googled it and all I found were obituaries,” she said. “I found a passing mention of it on the Mayo Clinic website.”

Having been an experienced advocate for rape crisis programs and child safety programs, she knew that more needed to be done to further research into IBC.

“We have a serious testing issue,” she said.

The mother of five is determined to funnel as much money as she can into IBC research programs.

“Eighty-nine percent of my dollars go to research,” she said, adding that the rest is used to operate the foundation.

In contrast, she said, only 2% of “pink money” goes to research.

“We keep very little back for operating expenses,” she said.

The key to surviving IBC, like any cancer, is early detection and treatment.

“If there is a sudden change to one breast, get it looked into,” she said.

She said IBC doubles in size every couple of weeks. She said it is important for women to be aggressive in getting a diagnosis because it is so easily misdiagnosed by doctors.

“All of the young ones (women), they’re dismissed,” she said.

For her efforts in fighting IBC, Arnold was named one of the 50 Women of Influence in 2017 by Houston Woman Magazine.

To learn more about IBC or to donate to Arnold’s foundation, visit www.theibcnetwork.com.

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