‘Lymphedema Changes Your . . . Way of Life’

“It’s a heartbreaking experience,” says Diane Ehlers, whose leg started to swell up several years after she underwent radiation therapy for recurrent cervical cancer.

The Stamford, Conn., woman, whose cancer surgery required lymph node removal, then learned she had lymphedema--a condition caused by an accumulation of lymph fluid that produces swelling. That was 10 years ago, a time when there was no effective treatment, Ehlers says.

“I was out there with no help,” she says.

Karin Douglas and Terry Lubman understand Ehlers’ despair. They, too, developed lymphedema in their arms after breast cancer surgery and lymph node removal several years ago. They, too, ran up against a brick wall when they attempted to find out more about the condition.

What is known is that lymphedema most commonly affects the arms and legs of those it afflicts. It occurs when lymph nodes are removed during surgery, are missing from birth, are impaired by an accident, or are removed after an infection or radiation treatment. There are also unknown causes for the condition.

*

Dr. Janet Freedman, a physiatrist (a specialist in physical therapy) and medical director at the Easter Seal Rehabilitation Center in Stamford, likens what happens with lymphedema to pouring water through a colander with half the holes blocked.

“If you keep pouring water, eventually it overflows,” she says. “The nodes back up.”

In addition to swelling, a serious consequence for people with lymphedema is an increased susceptibility to infections.

“There isn’t a cure,” Freedman says. “What we do is try to reduce the limb to the smallest size possible and maintain it at that size.”

That involves massage by a trained therapist and the overnight use of elastic bandages. Yet many people remain frustrated in finding effective help for the condition, says Anne Stewart, a psychology rehabilitation specialist at the Easter Seal Rehabilitation Center.

Stewart assists the support group that Douglas was instrumental in founding. When she first discovered the dearth of information on lymphedema, the proactive Douglas sought out the National Lymphedema Network in San Francisco and did research at various medical school libraries.

“It helped me take control of my condition,” she says. After joining a breast cancer support group at the Bennett Cancer Center in Stamford, Douglas worked to bring lymphedema awareness to the group.

*

Through Douglas’ efforts, the program has been extended to breast cancer patients at Stamford Hospital who receive an information packet about lymphedema. Another of Douglas’ efforts has resulted in a pink wrist band worn by breast cancer patients at Stamford Hospital on their “at-risk arm” after lymph node removal.

Douglas explains that the at-risk arm should not be used for blood-pressure testing or any invasive tests or injections that could bring on an infection and cause lymphedema or worsen an existing condition.

Importantly, members of Douglas’ support group at the Rehab Center have also learned more about their condition. Lubman says the group has been helpful in allowing her to interact with others who know how she feels.

“Lymphedema changes your whole way of life,” Stewart says. But, “People can still have full, productive lives. But it is a complication that makes it challenging.”