Health Library

Lymphedema Difficult for Women after Breast Cancer

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 do worse than women without the condition and have higher out-of-pocket medical costs after radiation and surgery.

A study reported in the Journal of Clinical Oncology says breast cancer survivors who develop lymphedema report a lower quality of life and higher levels of anxiety and depression.

In addition, they have an increased likelihood of chronic pain and fatigue and experience greater difficulty with social and sexual functioning.

Costs for Lymphedema Treatment

The study also found that lymphedema raised two-year postoperative medical costs from nearly $15,000 to more than $23,000. The additional costs were from office visits, treatments for infections, and mental health services, including prescriptions for antidepressants.

One reason for higher out-of-pocket costs: Insurance companies do not always cover lymphedema treatments, which can include compression garments and specially trained therapists who provide massages and physical therapy to help the area drain.

Study author Ya-Chen Tina Shih, Ph.D., is an associate professor of health economics at the University of Texas MD Anderson Cancer Center.

Dr. Shih says that 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.

Insurance companies have wide latitude in determining benefit levels, she adds.

"Right now, it's really up to insurance companies' interpretation for what is appropriate lymphedema treatment," Dr. Shih notes.

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, says Dr. Brian Lawenda, clinical director of radiation oncology at the Naval Medical Center in San Diego.

The study found that for some breast cancer survivors, lymphedema, which can develop years after radiation and surgery, is as distressing as the initial breast cancer diagnosis.

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, adds Dr. Shih. Since there is no standard definition for lymphedema, physicians may not list lymphedema as a reason for the office visit, and not all women seek treatment.

Medical Problems Can Be Many

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.

"It's a terribly overlooked problem," says Robert Smith, Ph.D., director of cancer screening for the American Cancer Society (ACS). "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, others can be more severe. Swelling in the affected arm can lead to loss of motion, 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.

Dr. Lawenda says about one third of people with lymphedema get infections because the fluid backup inhibits the immune system's response.

The study found that women in the western US 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, Dr. Shih says, 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, explains Dr. Lawenda.

"It is a condition that's not curable," he says. "However, it is manageable, treatable, and will improve."

Always consult your physician for more information.