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No lump, still cancer

IBC survivor dedicated to fighting rare form of breast cancer

Promise - Summer 2013

IBC survivor dedicated to fighting rare form of breast cancer

Terry Arnold, founder of The IBC Network Foundation, enjoys New York City with her daughters, Natalie Arneson and Veronica Arnold, and her grandson, Julian. While in New York, Terry spoke to the American Cancer Society’s Reach to Recovery group on IBC patient needs. Photo courtesy of Terry ArnoldBy Miriam Smith

“That’s funky looking,” Terry Arnold’s family physician said with a laugh after examining her red, swollen breast for the first time. It was the beginning of a desperate, four-month search for a diagnosis.

Finally, in September 2007, Arnold landed in MD Anderson’s Morgan Welch Inflammatory Breast Cancer (IBC) Research Program and Clinic, the first in the world dedicated to fighting this devastating form of breast cancer.

“I was so relieved to have an answer, I was probably the most excited person in the world to get a cancer diagnosis,” says Arnold. “I thought I was a well-informed person, so it shocked me that I didn’t know about IBC.”

IBC accounts for less than 5% of breast cancer diagnoses. This rare cancer differs from other forms of breast cancer in that it typically forms in sheets rather than a lump, making IBC often impossible to detect via mammogram. It’s also more aggressive and more deadly.

Arnold says she became an IBC advocate, determined to build awareness and raise funds for this disease, soon after her diagnosis. With the help of caregivers and trusted friends, she initially set her fundraising goal at $30,000 to gauge interest in funding research for her beloved doctor, Wendy Woodward, M.D. Arnold met that goal in a matter of weeks.

“After that I said, ‘OK, it’s not just me. There are people interested in funding late-stage, metastatic cancers.’”

Fast-forward to 2013. Arnold is celebrating five years without an IBC reoccurrence, something only 40% of IBC patients achieve compared with 90% of patients with other breast cancers. Her organization, The IBC Network Foundation, recently made its second donation, in the amount of $75,000, to IBC research at MD Anderson.

“The reality is that Terry and The IBC Network are a part of our team,” says Woodward, associate professor of radiation oncology. “It’s an organization fully integrated into our program.”

Naoto Ueno, M.D., Ph.D., shares his latest research developments with The IBC Network Foundation at a check presentation in May. Photo by Barry SmithUnder the leadership of Naoto T. Ueno, M.D., Ph.D., executive director of the Morgan Welch IBC Program, this year's funding from the foundation will go toward a study of statins, a class of drugs frequently used to lower cholesterol.

“Research shows that people who have been taking statins to lower cholesterol at the time of breast cancer diagnosis have a lower rate of recurrence than people who aren’t taking them,” Ueno says. “When we heard this idea, we decided to quickly look into it for IBC because the disease is known to have this inflammatory component, and statins tend to reduce inflammation.”

The research is still in its earliest phases, but Arnold has unwavering faith in the IBC team at MD Anderson, just as MD Anderson had in Arnold during her time of need.

“There were times I was in treatment for 12 hours, leaving the hospital at one in the morning, and the team at MD Anderson was there 12 hours with me,” Arnold says. “So for me to be able to do something to support their work is an incredible honor.”

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