To some breast cancer survivors, lymphedema, which can develop years after radiation and surgery, is as distressing as the initial breast cancer diagnosis, the study found.
Using medical claims information on 1,877 women, researchers found that 10 percent sought treatment for lymphedema. However, that was probably an underestimate of the true incidence, Shih said, because there is no standard definition for lymphedema, doctors may not list lymphedema as a reason for the office visit and not all women seek treatment.
Previous research has shown that up to 50 percent of breast cancer survivors develop lymphedema, with 32 percent having persistent swelling three years after surgery, according to the study.
"It's a terribly overlooked problem," said Robert Smith, director of cancer screening for the American Cancer Society. "Many of these women have significant out-of-pocket expenses, and prolonged and chronic health problems, as a result of it. It's not curable, and once women have lymphedema, unless it's properly managed and treated, it can become progressively worse."
While some have mild cases, for others, the swelling can lead to loss of motion in the affected arm, cysts, skin thickening and infections such as lymphangitis, a bacterial infection of the lymphatic vessels, or cellulitis, an inflammation and infection just below the surface of the skin.
About a third of people with lymphedema get infections, which occur because the fluid backup inhibits the immune system's response, Lawenda said.
The study found that women in the western United States were more likely to have filed lymphedema-r
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