IBC: A Rare but Aggressive Breast Cancer

Inflammatory Breast Cancer (IBC) is described, by experts in the breast cancer field, as a rare breast cancer affecting between 1-5% of women diagnosed in the United States. It is a cancer that grows quickly. By the time it is diagnosed it is often times a Stage III or IV. IBC, when compared with other breast cancers, is usually diagnosed in younger women. It occurs in African-American women more frequently than white women.

During my years as a navigator, I met a only a few women with IBC. Through social media, I continue to meet many more women with this type of breast cancer. Social media puts faces on this disease and the impact it has on women and their families.

Difficult to diagnose, with symptoms that can be mistaken for other conditions, such as mastitis, which an infection of the breast, Inflammatory Breast cancer rarely presents with a lump that can be felt in an exam or is visible in a screening mammogram. Many women with IBC have dense breast tissue that makes mammography screening even more of a challenge.

One of the women I became friendly with on Facebook shared her experiences with me from diagnosis through treatment. A staunch advocate for women with IBC, and a frequent guest speaker at conferences for cancer specialists, she regularly took time out from caring for her young children to be a support to women newly diagnosed with the disease.

My friend thought she had mastitis when her baby would not nurse from one breast that was red and warm. The next day she went  to see her OB, who didn’t like what he saw. A day later, she was at a cancer center where she had a mammogram, an ultrasound, and core biopsies on her breast. Her anxiety grew as the red rash began to spread across her chest.

Her diagnosis came with the need for immediate chemotherapy, which began a week later.

Chemo was hard, and the fear of infection kept her home during several months of chemo treatment. Then it was time for a bilateral mastectomy. During the chemo treatments that followed surgery, she lost her hair and became more and more weak.

Social media became her connection. It helped her build friendships with other women with IBC and access much needed support during the times she was too sick to get out of bed, and there were many such days.

When speaking to groups, she always encouraged women to seek immediate medical attention if they had any of the following symptoms.

  •     Swelling and redness over a third or more of the breast.
  •     Breast skin that is pink or reddish purple, or bruised.
  •     Breast skin with ridges or looks pitted, like orange skin.
  •     Rapid enlargement of breast size.
  •     A breast that feel heavy or feel like it is burning.
  •     An inverted nipple.
  •     Lymph nodes under the arm or those near the collarbone that are swollen.

Inflammatory breast cancer is treated first with systemic chemotherapy to help shrink the tumor, then with surgery to remove the tumor, followed by radiation therapy.

This approach to treatment is called a multi-modal approach. Studies have found that women with inflammatory breast cancer who are treated with a multi-modal approach have better responses to therapy and longer survival.

Many things will influence the prognosis of a woman diagnosed with IBC.The stage of the disease at time of diagnosis, the age of the woman and her overall health, and how her IBC responds to treatment are all factors in the length of her survival.

There are two organizations you will want to contact if you or someone you know has Inflammatory Breast Cancer. They are:

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