Inflammatory breast cancer survivor advocates for education and research dollars

Terry Arnold, a six-year survivor of inflammatory breast cancer (IBC), says it's strange to sit in the audience and see slides about the disease knowing you are included in the numbers. That was the situation on Tuesday at the education meeting on IBC at the San Antonio Breast Cancer Symposium.

Terry Arnold, six-year IBC survivor and founder o the IBC Network Foundation Terry was watching slides on the use of radiation and its efficacy in helping women survive. The speaker was Wendy Woodward, a radiation oncologist and section chief of the breast cancer radiation oncology program at MD Anderson Cancer Center in Houston. Terry is her patient and six years ago Woodward's radiation "kicked her butt." But Terry is quick to add that it was great to be in that much pain because it meant she might live. She had spent the previous four months being passed around by doctors who didn't know what was causing her right breast to be swollen and red. Her odyssey began at age 49 in May, 2007, when she visited her family internist after noticing her right breast was swollen and warm. At the time she owned a small book store in her hometown just east of Houston. "I thought a bug had bitten me or something," she says. "I didn't have a fever so I knew it wasn't mastitis." Her family internist took one look at her breast and said, "That's funky looking," Terry says. Then he said he knew what the problem was, she had a pituitary infection. He gave her a prescription for antibiotics and sent her to an endocrinologist for a confirmation. The endocrinologist disagreed with the internist's diagnosis and said it was an infection that would "self correct." When she said she was worried it might be breast cancer, he told her "not to get crazy on him."By then her breast was getting darker and peau d'orange (a puckering that looks like orange peel) had begun appearing. Her internist refused to see her until she had taken all eight weeks of the meds despite the fact that her breast was getting worse. She even begged the receptionist to call him when she took her daughter in to see one of his partners for another issue. "She told me I was making a scene because I was crying," Terry says. "She said he wasn't there and she was going to call security."In pain and frustration, Terry went immediately to a drug store to get her daughter's prescription filled and asked the pharmacist if he could recommend a good family practitioner who would see her. He gave her the name of a woman internist who Terry called on the spot. The doctor agreed to see her the next day. When the doctor met with her she took one look at Terry's breast and met her eyes. "I know what you have and it's not good," she said, referring her to a breast surgeon. "The surgeon did a biopsy and when he came back into the room he sat down to tell me he thought it was too late and burst into tears. I was comforting him." After walking out to the lobby to tell her husband, they both decided to check with MD Anderson Cancer Center. What they learned from the specialists there, who redid all the testing, was that it was actually worse than she had been told because scans revealed another tumor in her left breast, positive nodes throughout her clavicle area and as well as cancer in the peritoneal cavity. And it was all triple negative. "The oncologist said I would have 18 months of treatment," Terry says. "Six months of chemo, then surgery, then chemo again and then radiation. I was just really excited because that meant he thought I would live for 18 months. I was ready to just donate my body to them for research."Then Terry had to tell her four children, ages 8 to 24. It was her daughter's first day of college. Terry began chemotherapy within the week and after six months everyone was astounded to see she had had a complete response. She was NED. Then she had a bilateral mastectomy – no skin sparring – which is something she feels strongly that women should not do because of the high probability that the cancer will move to the skin. Radiation followed. When Terry finished treatment, it was time to heal, but she was more and more frustrated by the lack of information about IBC – so she started the Inflammatory Breast Cancer Network, which raises funds for research and links patients and survivors. "I have 273 IBC patients in my online support group and I have 75 in the UK," Terry says. Today when she isn't on the phone with a woman who has been newly diagnosed, she is coming up with ways to raise funds. To date she and her volunteer staff have raised $100,000. In a way IBC saved my life, she says, because where the other tumor was located, I never would have found it before it became deadly.