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Peeling Apples with Lymphedema: One Woman’s Experience After Breast Cancer Therapy

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In 2001, Susan Niebur had a successful career with NASA. As an astrophysicist, Niebur researched new missions to explore planets within our solar system and beyond. But that was before she heard the terrifying words, “You have breast cancer.”

Shortly after the birth of her second baby, Niebur, who lives near Washington D.C., was diagnosed with inflammatory breast cancer (IBC). It was June 16, 2007, just three weeks after her mother-in-law was diagnosed with infiltrating ductal carcinoma, another kind of breast cancer. After spending ten months in chemotherapy, radiation and recovering from a double mastectomy, Niebur learned she would have to deal with a side effect of her surgery and radiation treatments called lymphedema— the swelling of her arms, hands and chest— for the rest of her life. She was just 37.

She was referred to a lymphedema therapist at the time of her double mastectomy and right axillary dissection because of the large number of lymph nodes that would have to be removed. IBC is a fast growing, highly invasive cancer.

During her preventative meeting with a woman named Bretta, her primary therapist, Niebur was given prevention and treatment information, which she read with conviction. But when her right arm began to swell about a month after surgery, it caused a reaction even Niebur didn’t expect.

“I freaked out,” she said. “Activities that were commonplace in my life before my surgery now spelt trouble. I can’t wear rings or watches, carry a purse, or get a manicure. Getting a mosquito bite or paper cut is now considered dangerous, and worse, I was told that I couldn’t ever pick up my children with my right arm again.”

Approximately 10 million Americans have lymphedema following cancer treatment, recurrent infections, injuries or vascular surgery. According to the National Cancer Institute (NCI), between six and 30 percent of breast cancer survivors suffer with breast cancer-related lymphedema or BCRL. The range of women with BCRL is large due to the fact that many women are unaware that lymphedema is a side effect of their cancer treatment, so they may never seek treatment for it, and tracking BCRL is not currently required.

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Thank you for your comment Haralee. Anecdotally, I have heard many breast cancer survivors say they were not fully informed about lymphedema. Likewise, a 2000 study published in the Breast Journal, estimated that 77.5 percent of rural women were never told lymphedema was a possible side effect prior to their treatment. Many women living with lymphedema today may not know the swelling in their arms, hands, chest or breast is a direct side effect of their treatment and have not sought medical attention for it. Hopefully in the decade since this study was published, women are being better informed about their options and possible outcomes. It is encouraging that more attention is being payed to this terrible and debilitating condition in terms of education and research, and new microsurgery procedures may greatly reduce the number of women who must face dealing with it in the future.

June 14, 2010 - 10:29am

One of the side effects that is debilitating but not talked about often enough especially by the medical community.
Good story!

June 10, 2010 - 2:29pm
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We value and respect our HERWriters' experiences, but everyone is different. Many of our writers are speaking from personal experience, and what's worked for them may not work for you. Their articles are not a substitute for medical advice, although we hope you can gain knowledge from their insight.

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