A Rare Form of Breast Cancer Almost Went Unnoticed

The change Jeanne Calkins felt in her right breast was subtle at first, almost unnoticeable. "It wasn't a visible change, but a kind of thickening of the tissue," she said. When she mentioned it to her physician at her annual check-up, her doctor agreed there was a difference in the breast tissue and sent her for her annual mammogram. "My mammogram was normal, so I wasn't overly concerned," the 52-year-old Parkville woman says.

But as the months went by, the change in Jeanne's right breast became more obvious. "Probably the most disturbing symptom was that my nipple became inverted and the skin on my breast had an orange peel appearance," she explains.

This time Jeanne's physician performed a breast biopsy, but the results were inconclusive, so she was referred to Mark Epstein, M.D., a general surgeon on staff at North Kansas City Hospital. "He did a fine needle biopsy of the nipple and a punch biopsy that removed a much larger section of the breast," says Jeanne. Those samples revealed the answer to Jeanne's medical mystery - she had inflammatory breast cancer (IBC), a rare form of the disease that accounts for between one and six percent of all breast cancer cases in the United States.

Although it took several months for Jeanne's symptoms to appear, inflammatory breast cancer often develops rapidly, making the affected breast swollen and tender. Other symptoms can include itching, nipple discharge, breast pain, a change in the color and texture of the area surrounding the nipple, and the breast may be warm to the touch. Early signs of more common types of breast cancer, such as a lump or suspicious area on a routine mammogram, are often absent in IBC. "There is no genetic link to IBC," Jeanne says. "And it's important for women to know that IBC doesn't show up on a mammogram or with ultrasound. It takes much more extensive testing to diagnose it."

After undergoing CT and MRI scans at North Kansas City Hospital to confirm the diagnosis and aid in planning her treatment, Jeanne went through three months of chemotherapy to shrink the affected area. Then, Dr. Epstein removed her right breast and the nearby lymph nodes.

As soon as Jeanne recovered from the surgery, she began a second round of chemotherapy, followed by 33 radiation treatments. "They basically told me they were going to throw everything but the kitchen sink at me to fight this, and they did," Jeanne says. In the midst of it all, Jeanne became exhausted. "I was so tired, it was a struggle just to get from the bedroom to the bathroom," she admits. She found North Kansas City Hospital's Cancer Rehabilitation and Fatigue Management Program a welcome respite. "I saw the program's director, Mary Calys, three times a week for a few months. She was a tremendous help to me."

As her body healed from the cancer treatments, Jeanne encountered other medical obstacles to her recovery, including a wound that wouldn't heal and a life-threatening infection. Through it all, she says the staff at North Kansas City Hospital was kind, considerate and professional. "On all levels, the doctors, the nurses and the support staff were very attentive and caring. I never felt like I was just another number. Everyone spent as much time with me as I needed and that was very meaningful for me."

Even though survival rates for IBC are lower than for other forms of breast cancer, nearly 18 months after finishing treatment, MRI and CT scans show no evidence of the disease that once threatened Jeanne's health. "Everyday is a good day because I am beating the odds," Jeanne adds. "I just want to encourage women to pay attention to their bodies and to be proactive when it comes to their health."

For more information about Inflammatory Breast Cancer, visit www.ibcresearch.org.

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