By Cathy Holt

           Most women think they know all about breast cancer, and they look for lumps, have mammograms, see their doctors. But none of that will diagnose one silent breast cancer killer that most women know virtually nothing about.

          Inflammatory Breast Cancer (IBC) is an aggressive, rapid-growing form of breast cancer usually not detected by mammograms or ultrasounds. It requires immediate treatment with chemotherapy prior to surgery and is treated differently than more common types of breast cancer. This type of cancer generally advances rapidly, and the cancer cells often spread to other parts of the body, causing more tumors (metastases).

Higher Incidence among African American Women

Dr. Helen Wiest, Medical Director of Asheville Breast Center, says that more African American women die from breast cancer than white women. She cited a study by K.W. Hance, et. al., in the July 2005 Journal of the National Cancer Institute that showed that “IBC incidence rates were statistically significantly higher in black women (3.1 per 100,000) than in white women (2.2 per 100,000) in 1998-2000.” The study also found that women diagnosed with IBC had significantly poorer survival (2.9 years) than women with locally advanced breast cancer (6.4 years). Black women with either type of breast cancer had poorer survival rates than white women with the same diagnosis.

Another study, by Massimo Cristofanilli et al., University of Texas Cancer Center, found that "African Americans have a higher incidence of IBC than do Caucasians and other ethnic groups: 10.1%, 6.2%, and 5.1% of breast cancer cases, respectively."

Dr. Wiest added, “We\’ve known for a long time that more black women than white were dying from breast cancer. These studies showed that this was not just because the white women were having more mammograms and thus earlier detection, but that there was a higher incidence of this very aggressive form of cancer, which has lower chances of survival. It is crucial to get medical attention quickly if any of the symptoms are present.”

You Don’t Have to Have a Lump to Have Breast Cancer

IBC usually grows in nests or sheets, rather than as a confined, solid tumor, and therefore can be diffuse throughout the breast with no palpable mass. Thus, it may easily be missed on a mammogram and can be diagnosed only via biopsy. The cancer cells clog the lymphatic system just below the skin, causing swelling and inflammation.

Women with IBC are sometimes misdiagnosed, since the symptoms can be similar to mastitis, a breast infection. Therefore some doctors, not recognizing IBC, will prescribe antibiotics. If a response to antibiotics is not apparent after a week, a referral to a breast specialist is warranted and a biopsy should be performed.

Younger Women Are at Risk

Age 52: Median age at time of diagnosis of IBC.

Age 62: Median age at time of diagnosis of Breast Cancer.

A surprising portion of young women with IBC had their first symptoms during pregnancy or lactation. The misconception that young women are at lower risk for breast cancer, coupled with the fact that IBC is so aggressive, may result in metastases by the time the diagnosis is made. One young woman was just 16 when she died from IBC. She was too embarrassed to tell her mother her breast “looked funny” — slightly enlarged and the nipple inverted — classic IBC symptoms. There is documented evidence of two cases in girls as young as 12 years old, one of whom had not begun menstruation, and there are have been cases in women who are premenopausal, perimenopausal, and postmenopausal.

Typical Symptoms of IBC include one or more of the following: 

Trust Your Intuition, Demand a Diagnosis

• Swelling, usually sudden, sometimes a cup size in a few days

• Itching

• Pink, red, or dark colored area (called erythema) sometimes with texture similar to the skin of an orange (called peau d’orange)

• Ridges and thickened areas of the skin

• What appears to be a bruise that does not go away

• Nipple retraction

• Nipple discharge, which may or may not be bloody

• Breast is warm to the touch

• Breast pain (from a constant ache to stabbing pains)

• Change in color and texture of the aureole

In 17 years as a Breast Program Nurse at Mission Hospital doing pre- and post-operative teaching and prosthesis fitting and running a support group, Denise Steuber has seen fewer than ten cases of IBC, out of 300 women a year with breast cancer. These women were usually in their forties and early fifties; all were successfully treated. “When a woman has Inflammatory Breast Cancer, the symptoms are fairly obvious. The first thing our physicians think of is, “Is this inflammatory?\’” Steuber says. She tells women, “If you think something is wrong with your breast, and the doctor says it\’s fine, come back in six months — don\’t listen! You say, “No, I need to know what this is.\’”

Nancy Key didn’t know. "I was furious and at the same time, terrified that I was going to die, ’cause I didn’t know," she said. "How can I have something when I go to the doctor every year, I do self breast exams every month and what is this? Why am I surprised?" asks Nancy.

Kristine Turck was just 37 when she was diagnosed with IBC, three years away from the recommended age to start mammograms. "It’s gonna be a tough fight," she says.

What Marilyn Willingham didn’t know killed her. "She smiled and took a breath and went to sleep," says her husband Phil.

The only definitive diagnosis of IBC is made with a biopsy; it doesn\’t show up on a mammogram. Every woman needs to be aware of her breasts and how they feel. If something doesn\’t feel right, she needs to get a diagnosis. If a doctor treats a rash on the breast with antibiotics and it doesn\’t go away, it could be IBC. If a doctor dismisses it, get a second opinion. Steuber noted that she had not noticed a higher incidence of African American women with the disease, but added that there is not a large African American population in Asheville. “I am here to be a resource for women,” she says, inviting the public to call her at 213-1839 with their questions.

Standard Treatments for IBC

One of the unique features of IBC is that before they receive surgery or radiation patients normally receive chemotherapy to shrink the tumor so that surgery is more successful.

Treatment of inflammatory breast cancer usually involves local treatment to remove or destroy the cancer in the breast and systemic treatment to control or kill cancer cells that may have spread to other parts of the body. Local treatment affects only cells in the tumor and the area close to it; systemic treatment affects cells throughout the body. The local treatment may be surgery and/or radiation therapy to the breast and underarm. The systemic treatment may be chemotherapy, hormonal therapy to counteract the effects of estrogen, or both. In some cases, local treatment may be followed by additional systemic treatment with hormonal therapy, chemotherapy, or both. Some women also may have biological therapy, which stimulates the immune system to fight the cancer. Recent studies have shown a 50% survival rate after five years following treatment, and a 35% survival rate after 10 years.

___________________________________________________

For more information, contact the IBC Research Foundation at www.IBCresearch.org or phone 1-877-STOPIBC. Another good resource, the Susan G. Komen Breast Cancer Foundation, was founded by the sister of a young woman who died of breast cancer (www.komen.org).