Just live with it. That often was the advice for people with lymphedema — assuming it was even diagnosed in the first place. The body’s lymphatic system transports excess fluids from tissues to the blood and also helps fight infection.
A buildup of lymph fluid can lead to lymphedema, a chronic condition that involves swelling, most often in a leg or arm. Secondary lymphedema, the most common form, is caused by damage to the lymphatic system, such as that resulting from breast-cancer surgery or radiation. Lymphedema affects millions in the United States, mostly women. But until recently, little attention was paid to the condition. Bobbi Van Riper, a Colorado Springs woman with lymphedema, tells of a fellow breast-cancer survivor who suffered in silence for years with lymphedema after her doctor told her, “What do you care? We saved your life.” If doctors in the past didn’t appear too concerned, that may have been because they had little to offer patients, says Jean Smith, a lymphedema clinical nurse specialist at Penrose Cancer Center. “Doctors really felt like there wasn’t anything they could do.” Care has improved in the last decade or so to the point that lymphedema is now recognized as a manageable condition. But Smith complains of a tendency to forget the chronic nature of lymphedema. Instead of seeing patients once and sending them on their way, health-care providers should be prepared to deal with the long-term physical and psychological issues stemming from lymphedema, Smith says. It’s not simply an annoyance: The swelling can be painful and, if untreated, the affected limb is more prone to infection. For a cancer survivor, lymphedema is a constant reminder of that battle. The Sinclair School of Nursing at the University of Missouri-Columbia is conducting a study following more than 300 women treated for breast cancer. Two years after surgery, 40 percent showed signs of lymphedema, the study found. Secondary lymphedema can occur weeks, months or years after damage to the lymphatic system. “We know that there are 2 million women in this country who are breast-cancer survivors,” says Jane Armer, a professor at the Sinclair School of Nursing. “That’s a whole lot of people who are at risk for lymphedema sometime during their lifetimes.” That risk may be falling with refinements in breast-cancer surgery and more precisely targeted radiation, Armer says. But breast-cancer treatment isn’t the only culprit. Any surgery that may require removal of lymph nodes, such as surgery for melanoma, colon, prostate or head and neck cancers, can lead to secondary lymphedema. Primary lymphedema, which is less common, is believed to result from a developmental abnormality in the lymphatic system. Cheri Swann, 52, of Colorado Springs, developed lymphedema in her legs after surgery to remove excess skin — a reminder of gastric-bypass surgery more than 20 years earlier. She lost more than 180 pounds after the procedure in 1982. “I tell people that I lost a 6-foot-1 man out of my 5-foot-3 body,” she says. For decades, she put up with the excess skin resulting from her dramatic weight loss. But in October 2004, she had the excess skin surgically removed from her arms and legs. In March 2005, she had another surgery to remove excess skin around her abdomen. Four months later, she was diagnosed with lymphedema. “I wouldn’t wish this on my worst enemy,” Swann says. Her legs burn and tingle from the swelling. Instead of showing off her slimmer body, she wears long pants to hide the compression stockings she wears during the day. “You have to pull and tug and stretch, and that’s another concern I have is when I get to be an older woman and I can’t put these on, who’s going to do it for me.” She wears a sturdier compression garment at night and also periodically undergoes manual lymph drainage, a light massage that stimulates lymph vessels and helps the flow of lymph fluid. Drainage therapy and compression garments are the cornerstones of lymphedema treatment. Skin care, to prevent infection, and exercises to promote lymph flow are also typically stressed. Pneumatic compression pumps can also be used to get lymph fluid moving. Some research points to benefits of the pumps, but other research indicates they may further damage the lymphatic system or cause other problems, Smith says. She also points to research indicating manual drainage therapy may be of little benefit in treating lymphedema in arms and legs. She stresses compression as the key to managing lymphedema, but says, “A lot of people believe that the drainage therapy is needed.” Armer says the drainage therapy can ease symptoms and help prevent infection by keeping the otherwise-stagnant lymph fluid moving. Van Riper sells compression garments and pumps at her business, In Care of You, which offers products for people dealing with complications from breast cancer, diabetes and other conditions. She developed lymphedema two years after her breast-cancer treatment in 1996. She wears a compression garment on her left arm at night to keep her lymphedema in check. She also has a daytime compression sleeve, but doesn’t regularly wear it. “I should,” she says, “but I know how much I can get away with.” She wears the compression sleeve when flying, which can worsen lymphedema. Van Riper also undergoes manual drainage therapy about twice a month at the hands of Kathleen Andrew, a massage therapist and certified lymphatic therapist who leases space at In Care of You. She believes the therapy helps, but says compression is needed as well. She also sees a role for the pumps, particularly for people who live in remote areas and don’t have access to regular therapy. “I don’t think everybody should use them, but certainly there are instances when people need to.” RESOURCES National Lymphedema Network, www.lymphnet.org, 1-800-541-3259 Penrose Hospital lymphedema program, 776-5273 Memorial Health System Rehabilitation Services, 365-5642 In Care of You, 442-6770, www. incareofu.com