Asked by Jeannie, Parker, Colorado
I have inflammatory breast cancer and I have been through chemo and a double mastectomy. They found active cancer cells so the cancer has spread. The oncologist said she didn't think there was anything more they could do for me. I start radiation soon but she didn't think that that would be very helpful either. Is there anything out there that may help me?
Dr. Otis Brawley
Chief Medical Officer,
American Cancer Society
Inflammatory breast cancer is a very aggressive form of breast cancer. Less than 1% of all breast cancer patients have this type of disease.
The patient with IBC usually presents with reddened and swollen skin over the breast. In IBC, the skin often takes on the appearance of the skin of an orange, which is called "peau d'orange." The nipple can be flattened or blistered.
Early on, it can be confused with a benign infection of the breast called mastitis. Mastitis is commonly seen in breastfeeding women and unlike IBC often presents with fever and blood studies that indicate bacterial infection.
The diagnosis is usually made by a biopsy of the involved skin over the breast. At diagnosis, the lymph nodes of the armpit are usually involved and one-third of women have disease that has spread to distant sites beyond the breast.
There are no known risk factors for IBC. In North America, it does tend to be of higher incidence in African-Americans versus white Americans but is seen in women of all races and ethnicities. We have little information about it in Africa and Asia. Women with IBC tend to be younger than women with other forms of breast cancer. Inflammatory breast cancer is also a more common form of breast cancer in men.
Therapy of IBC confined to the breast and armpit is usually chemotherapy followed by surgery to remove the breast (a mastectomy) and lymph nodes of the armpit, then radiation to the chest wall and armpit.
Breast conserving therapy is rarely possible. After treatment that leads to disappearance of disease, the patient should undergo good surveillance to detect recurrence early. Standard treatment for those who relapse is chemotherapy and radiation.
Unfortunately, this is a disease in which our therapies are far from adequate. Studies of patients treated as above have five-year disease-free survival rates of 20% to 45% and overall five-year survival of 30% to 70%.
A patient at any point in treatment for this disease might reasonably consider a clinical trial testing a new therapy that might be better than the standard treatments.
I always encourage cancer patients to consider going into clinical studies, but it is important that patients enter well-designed, well-supervised clinical trials. One can find out what trials are available by calling the American Cancer Society Clinical Trials Matching Service at 1-800-303-5691 or visiting the ACS website. Note that I work for the American Cancer Society.
The matching service is free and is a partnership with the Coalition of Clinical Cooperative Groups. The Clinical Cooperative Groups are doctors and nurses at university hospitals and other clinical practices across the United States and Canada. They are sponsored by and work with the U.S. National Cancer Institute, which is a federal agency that oversees much of the cancer research in the United States.
The service can help you find research studies that are testing new drugs or methods to treat any cancer. Similar services are available within the European Union.
You may also find additional information from the Inflammatory Breast Cancer Research Foundation.
I wish you the best as you try to find a treatment useful to you.
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