After cancer treatments, there's threat of a chronic side effect: lymphedema

Since Susan Ruffini’s breast cancer surgery in 2006, the Riverhead woman has been hospitalized 11 times for bacterial infections stemming from lymphedema, a chronic, sometimes painful swelling that is one of the most serious potential side effects of cancer treatment.

“The breast cancer was put aside — did this, done that,” said Ruffini, 62. “Now you’re living with this and it doesn’t ever go away.”

Five to 10 million Americans have lymphedema, said Dr. Stanley G. Rockson, a professor of medicine at Stanford University and director of the Stanford Center for Lymphatic and Venous Disorders. Extrapolating those national numbers, that would mean between 43,000 and 87,000 Long Islanders have the disease, although Rockson said the incidence of lymphedema in any region depends on the occurrence of risk factors.

About 70 percent of people with lymphedema contract the disease after cancer surgery and other treatment that requires the removal of lymph nodes, radiation of lymph nodes, or other trauma to the lymphatic system, Rockson said. Venous diseases such as varicose veins also can lead to lymphedema, as can obesity, he said.

The damage to the lymphatic system blocks lymph fluid from traveling freely, leading to a buildup of fluid and swelling, he said. It’s most common in the arms or legs. The lymphatic system helps the body fight infection and disease.

Donna Bragg of Deer Park said her doctors aren’t sure what caused her lymphedema. Bragg, 65, sometimes experiences severe pain if she stands in place too long. She stopped hosting Thanksgiving most years because of extensive standing while cooking.

“By the time everyone came on Thanksgiving Day, I could barely stand,” she said. “It takes two days to recuperate from that.”

Bragg said she often wears a long skirt because she can’t wear tight clothing, and doesn’t want people to see her swollen legs.

Embarrassment of swollen limbs is common, people with lymphedema said. At a recent meeting of a monthly lymphedema support group at Memorial Sloan Kettering Cancer Center in Commack, participants talked about always posing for photos at angles that conceal their swelling, and avoiding sleeveless dresses.

The group recently celebrated its 10th anniversary. Fran Mercolino, 87, of Melville pushed for it after her lymphedema diagnosis. She recalled the “freeing” feeling of the first meeting, when she for the first time met others with the condition and each revealed the swelling that they usually tried so hard to hide.

“We took our blouses off and it was like, ‘Oh my God, you’ve got what I’ve got’ and ‘Oh my God, I’ve got someone to talk to,’” she said.

Another monthly lymphedema support group meets at Southside Hospital in Bay Shore.

Cancer survivors with lymphedema often have mixed emotions, said Karen Kell Hartman, a social worker at Sloan Kettering.

When cancer patients facing surgery are told about lymphedema, they often don’t think at length about it or the many other possible side effects of cancer treatment, Hartman said. They are focused on beating the cancer.

Once they develop lymphedema, she said, many people say, “‘Look, I hate the fact I have lymphedema. I hate the fact I can’t fit into clothing the way I used to, that one arm is larger than the other or my legs swell, that I can’t wear jewelry the way I used to. But what choice did I have? Was I not going to have the surgery?'”

Even though the disease affects millions, many doctors downplay its significance, said William Repicci, president and CEO of the Manhattan-based Lymphatic Education and Research Network.

“One thing I hear very often from patients who develop lymphedema early is for the oncologist to say, ‘You’ve got lymphedema, I saved your life from cancer, this won’t kill you, don’t complain, find a therapist,’” he said.

The disease’s effects can vary dramatically.

“I have patients with excruciating pain who experience pain every minute of every day” and others who have discomfort and a feeling of heaviness in their swollen limb but no severe pain, said Debbie Mattera, a physical therapist at Sloan Kettering who helps run the support group with Hartman.

Some people with the condition have extreme swelling; others have relatively slight inflammation. The amount of swelling doesn’t determine the level of pain or discomfort, Mattera said.

During the Sloan Kettering support group meeting, the 12 women reviewed exercises that help control swelling and pain.

When first performed, the exercises, along with massaging, help reduce swelling by redirecting lymph fluid from damaged areas of the lymphatic system, said Jomar Dimanlig, assistant director for physical therapy/lymphedema at Mather Hospital in Port Jefferson. Long term, they help maintain the improvements, he said. Dimanlig and his colleagues typically spend two to four weeks teaching patients the techniques so they can perform them at home.

Another key part of managing lymphedema is compression garments, specially designed flexible fabric that helps prevent lymph fluid from over-accumulating in one area, Mattera said. They also help compress the swelling, making it less noticeable, she said.

The garments are critically important, said Christina Galasso-Hernandez, 40, of Riverhead, whose 8-year-old son Nicholas has lymphedema that doctors believe was caused by the underdeveloped lymphatic system with which he was born. Yet the insurance company — a private company that works with the state’s Child Health Plus program — doesn’t pay for the garments, which she said cost $700 every three or four months. They wear quickly from frequent washing, she said. The insurance company won’t cover them because Medicare doesn’t, she said.

Other insurance companies also follow Medicare’s lead, although some cover the garments, said Jeannette Zucker, executive director of the Manhattan-based National Lymphedema Network, which promotes awareness of the disease.

The federal Lymphedema Treatment Act, currently in congressional committees, would establish Medicare coverage for the garments.

Ruffini wears compression garments, although her swelling is less extensive than most others in the Sloan Kettering support group. The biggest problem for her is cellulitis, the bacterial infection that has sent her to the hospital 11 times.

Lymphedema makes people more prone to disease and infection, so Ruffini is hypervigilant. During outdoor summer barbecues, she watches from inside a sliding-glass door to avoid bug bites. She stopped gardening, which she loved. She worries about dirty doorknobs and subway poles. When she starts feeling cellulitis symptoms, she must immediately leave work or home to rush to the hospital.

Ruffini doesn’t have the extreme pain some with lymphedema have. But, she said, the disease is a constant presence, from the heaviness and discomfort in her right arm to the limitations on her activities.

“Your whole life changes,” she said.