Living with Inflammatory Breast Cancer

New Doc 1Inflammatory breast cancer is the most aggressive and deadly form of breast cancer and it is one that is still commonly missed by both women and some physicians.

It is a rare cancer, accounting for between one and five percent of breast cancer cases in the United States. But it tends to strike younger women, is more common in African Americans, and isn’t usually associated with lumps. The most common symptoms are pain in the breast or arm, a warm or swollen breast and it can often be confused with mastitis. This type of breast cancer disease is resistant to most types of therapy available- today, however, researchers at Jefferson are testing new approaches to treat the disease.

Women receiving this diagnosis face incredibly difficult decisions about their treatment and their lives as they navigate what is for most a terminal illness at a young age.

Massimo Cristofanilli, MD, the director of the Jefferson Breast Care Center, and a world renowned expert in inflammatory breast cancer teamed up with patient advocate Patti Bradfield, writer and founder of The Inflammatory Breast Cancer Foundation to produce a book of patient stories called, Nobody is Listening: Stories of Inflammatory Breast Cancer.

The book, published earlier this year, recounts the personal stories of ten patients told through their own voices or through the memories of a loved one. Each story explains the symptoms that each woman noticed, as well her initial response. Many put off a trip to the doctor, or had doctors who did not make the right diagnosis initially.

Each story ends prematurely.

The book also explores both Dr. Cristofanilli’s and Patti Bradfield’s personal experiences with IBC. Both were independently touched by the disease and together found the inspiration to take on the mission to educate the public, to research the disease, and to care for the many women who are still misdiagnosed and neglected. Their commitment provides hope for the future understanding of this often deadly disease.

The following is an excerpt from the book. A patient named Moire was diagnosed with inflammatory breast cancer when she was 38. She writes:

I had an epiphany the other day – I decided that I was approaching my early demise in the wrong way. I had been despairing of the brutal unfairness of it all—especially getting it so young and at a time when I feel the most confident in myself. Some days those thoughts were so completely overwhelming that I had no idea how to deal with them without uncontrollable sobbing and getting so angry. But I have decided to think of it another way: Have I only gained this confidence and self-appreciation of the person I am and want to be because of my cancer experiences?… Who knows if that is the case, but those thoughts work for me for today.

Moire passed away May 8, 2007, when she was 39.

The Jefferson Breast Care Center is currently organizing a support group for women with inflammatory breast cancer to help patients bolster each other through their shared experience.The book Nobody is Listening: Stories of Inflammatory Breast Cancer is available on Amazon.com and elsewhere.

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