High Cost of Lymphedema From Article in US News & World Report

U.S. News & World Report TUESDAY, March 17

In breast cancer survivors, lymphedema -- an uncomfortable swelling of the arm and wrist -- can be one of the most vexing side effects of treatment. Now, a new study has found that women who develop lymphedema fare worse than women without the condition and have higher out-of-pocket medical costs after radiation and surgery.

Breast cancer survivors who develop lymphedema report a lower quality of life, higher levels of anxiety and depression, an increased likelihood of chronic pain and fatigue and greater difficulty functioning socially and sexually, according to a study in the March 16 online issue of the Journal of Clinical Oncology.

Lymphedema also boosted two-year, postoperative medical costs by $14,877 to $23,167, the study found. The additional cost came from office visits, treatments for infections and mental health services, including prescriptions for antidepressants. One reason for higher out-of-pocket costs: Insurance companies don't always fully cover lymphedema treatments, which can include compression garments and specially trained therapists who provide massages and physical therapy to help the area drain, said Ya-Chen Tina Shih, an associate professor of health economics at the University of Texas M.D. Anderson Cancer Center, in Houston, and an author of the study.

Although federal regulations and about 21 states require private insurance to cover lymphedema treatments after mastectomies, the laws are not specific about what constitutes lymphedema treatment and insurance companies have wide latitude in determining benefit levels, Shih said. "Right now, it's really up to insurance companies' interpretation for what is appropriate lymphedema treatment," Shih said.

Lymphedema is caused by a buildup of lymphatic fluid, usually as a result of damage to the lymphatic system from radiation or surgery. Melanoma and cancers of the head, neck and pelvic area can also leave people susceptible to the condition, said Dr. Brian Lawenda, clinical director of radiation oncology at the Naval Medical Center in San Diego and a lieutenant commander in the U.S. Navy.

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-related insurance claims than those in the Northeast. Women in all regions of the country probably suffer from the condition equally, Shih said, but more states in the West have passed laws requiring insurance companies to cover treatments.

Standard treatments include keeping the skin clean and moisturized, being careful when clipping nails, wearing compression sleeves to prevent swelling, doing therapeutic exercises and having massage to promote manual lymphatic drainage, Lawenda said. "It is a condition that's not curable," he said. "However, it is manageable, treatable and will improve."

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Comments by StepUp-Speak-Out Editorial Board

Indeed, early patient education, practice of risk reduction and self-managment, can make a huge difference in both the development of lymphedema, its course and treatment.

A recently published study showed that accurate patient education is a critical dimension of lymphedema risk-reduction. Knowledge of lymphedema and its risk reductions is essential to all breast cancer patients, and makes a difference in their long-term quality of life.

In this study only fifty-seven percent of the participants reported that they received lymphedema information.

"Cancer-Related Lymphedema: Information, Symptoms, and Risk-Reduction Behaviors," Authors: Fu, Mei R.; Axelrod, Deborah; Haber, Judith, Source: Journal of Nursing Scholarship, Volume 40, Number 4, December 2008 , pp. 341-348(8)

We at StepUp-SpeakOut are committed to changing this. It is our goal that every breast cancer patient receives full information on lymphedema and its risk reductions before his or her surgery.