Ginny Mason was 41 years old when her surgeon sat down next to her, took her hand ("Never a good sign," she says) and asked if she had ever heard of inflammatory breast cancer. As a nurse, Mason had more knowledge about breast cancer than the average person—but like most people, she didn't know there was more than one kind. Her mammogram was clean, she had no lumps in her breasts and there was no history of breast cancer in her family.
So how could her doctor be telling her that she may only have between 12 and 18 months to live? "On a scale of one to 10, this isn't the breast cancer you want," he told her. "This one's not very common, but it's deadly."
Inflammatory breast cancer (IBC) is rare, which is one of the reasons so few have heard of it. "It accounts for no more than 5 percent of all breast cancers," says Dr. George W. Sledge Jr., a medical oncologist and professor of medicine. "It's called inflammatory because that's how it looks. The woman who has inflammatory breast cancer has breast cancer that's red and inflamed, with an angry look to the breast cancer," he says.
Unlike typical breast cancer, IBC usually cannot be detected by a mammogram or ultrasound. While a lump may sometimes accompany IBC, the cancer usually grows in nests or sheets rather than as a confined, solid tumor.
Check yourself regularly for these symptoms:
Skin over the breast becomes pink, red or darkened with rash-like symptoms
Skin over breast thickens, sometimes with a fine dimpling with texture similar to the skin of an orange (called peau d'orange)
Breast is noticeably warm to the touch
Breast pain or tenderness (which can range from a constant ache to stabbing pains)
Swelling, usually sudden, sometimes a cup size in a few days
Nipple retraction or discharge
Change in color and texture of the areola
Because IBC is rare and symptoms can be subtle, Dr. Sledge says they are often misinterpreted. The symptoms of IBC are similar to a breast tissue infection called mastitis. Some doctors, not recognizing IBC, will prescribe antibiotics. Because IBC requires immediate treatment, Dr. Sledge says patients diagnosed with mastitis whose symptoms do not go away after seven to 10 days should consult their doctor for a biopsy immediately.
In Mason's case, her symptoms included sharp, shooting pains and breast enlargement. "I assumed it was premenopausal," she says. At the urging of her husband, Mason went to her doctor. One clean mammogram later, Mason was sent home with directions to eliminate caffeine and use a cold compress. "That's what you want to hear and you don't want to be a bother, so I went home," she says. "At that point in my life, I was a very quiet, compliant person."
Her symptoms gradually worsened, and six months later Mason was back in her doctor's office. She was referred to a surgeon who performed a biopsy. The next day, Mason was told she had inflammatory breast cancer.
According to Dr. Sledge, the standard treatment for inflammatory breast cancer is chemotherapy, followed by surgery, followed by radiation therapy. Mason was asked to begin chemotherapy immediately and took the weekend to inform her family and her boss. Mason cut her waist-length hair, began treatment and became determined to defy the odds—the survival rate for someone diagnosed with IBC is significantly lower than that of a typical breast cancer patient.
"The very sad thing is, whereas breast cancer prognosis has steadily improved over the years, IBC prognosis has not," Dr. Sledge says. It's not uncommon for the cancer to return after treatment. "In the long term, probably no more than a fourth to a third of IBC patients are long-term survivors," he says.
Mason says that although her prognosis was dire, she always knew she could be a part of the percentage who survived. After undergoing chemotherapy and a mastectomy, Mason is proud to say she has defied the odds and is a 15-year survivor. "This has really become my life," she says. "I feel blessed I can be a voice for the patients who haven't survived."
Because so many women have never heard of IBC, her goal is to spread awareness. Mason says very little information about IBC was available when she was first diagnosed in 1994. After her treatment began, Mason was researching online when she came across a support group for cancer patients. It was there that she met Owen Johnson, who started an all-volunteer organization called the Inflammatory Breast Cancer Research Foundation. Mason now serves as the executive director and works with physicians like Dr. Sledge who support the continued research of IBC.
Because she waited six months to see a surgeon after her first symptoms appeared, Mason knows she is lucky to be alive. She now wants every woman to be able to recognize the symptoms she once brushed off. "One of the most important things is knowing your own body," she says. "Pay attention to changes. It doesn't cost a thing to stand in front of the mirror."
And remember: You don't have to have a lump to have breast cancer.