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.