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.