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.
There is no cure for BCRL, but it can be controlled with treatment. For Niebur, treatment meant driving more than an hour for a six-week regimen of daily lymph massage, wrapping her arm in a gigantic ace-like bandage and manually draining the liquid trapped beneath her skin. That was the physical part. The emotional part meant dealing with self-image issues that come with having cancer.
Today, Niebur wears compression sleeves on both arms everyday to prevent the swelling from worsening, particularly when the weather starts to heat up. At first, the sleeves were hardly a fashion statement and being seen in public drew disconcerting stares.
“ I felt very un-sexy but yet virtuous,” she wrote about the sleeves in her blog, Toddler Planet, which she has used to chronicle her cancer journey, dealing with lymphedema, her remission and now, a recurrence.
Daily tasks, like peeling apples or using her microwave or oven means Niebur has to take extra precautions not to get cut or burned. Just a slip of the knife or steam from a hot dish or appliance could cause her swelling to get out of control.
Throughout her ordeal, Niebur has become increasingly thankful for her therapist. “Bretta has helped me more than anything else,” she said. “I hope every person with lymphedema can find a therapist that works for them, and that their insurance will cover the cost. I fought my insurance company for weeks on end during my treatment because they refused to cover my lymphedema therapy, or to understand that not just any physical therapist can do manual lymph drainage. Since it can be difficult to find a lymphedema therapist in-network, anyone facing this challenging side effect should consider a PPO plan or one with more liberal coverage. And lastly, do everything you can to prevent it.”
For more information on how to reduce the risk of lymphedema, visit the National Lymphedema Network at: http://www.lymphnet.org/lymphedemaFAQs/riskReduction/riskReduction.htm.
To read more about Niebur's cancer journey: http://toddlerplanet.wordpress.com.
Lynette Summerill is an award-winning writer who lives in Scottsdale, Arizona.
In addition to writing about cancer-related issues, she writes a blog, Nonsmoking Nation, which follows global tobacco news and events.