Docs Need to Consider Quality of Life When Assessing Lymphedema

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Lymphedema is swelling of the arm, hand, trunk, or breast caused by a build-up of lymph fluid in those tissues after breast cancer surgery or radiation therapy. Lymph is a thin, clear fluid that circulates through your body to remove waste, bacteria, and other substances from tissues. Edema is the medical term for swelling. Lymphedema can develop soon after treatment, or months or even years later. Individual studies have reported that as few as 10% and up to as many as 90% of women develop lymphedema after breast cancer surgery and radiation therapy.

A study that reviewed published research on lymphedema suggests that considering a person’s quality of life as well as reducing swelling is very important to managing lymphedema. Jane Armer, director of research at the Ellis Fischel Cancer Center and noted lymphedema researcher, was one of the scientists who did the study.

The research was published in the July 10, 2012 issue of the Journal of Palliative Medicine. Read the abstract of “Palliative Care for Cancer-Related Lymphedema: A Systematic Review.”

As part of their surgery, many people with breast cancer have at least two or three lymph nodes removed from under the arm (sentinel lymph node biopsy), and sometimes many more nodes (axillary lymph node dissection). If the cancer has spread, it’s most likely moved into those underarm lymph nodes first because they drain lymph from the breast. Many people also need radiation therapy to the chest area and/or underarm. Surgery and radiation can cut off or damage some of the nodes and vessels through which lymph moves. Over time, the flow of lymph can overwhelm the remaining pathways, resulting in a backup of fluid into the body’s tissues.

The researchers for this study found that many healthcare professionals and insurance providers decide if a person needs to be treated for lymphedema based only on how swollen their tissues are. But several studies have shown that the volume of fluid build-up doesn’t always correspond to the person’s level of discomfort. Each person is unique, with different tolerances for pain and treatment, goals, and support systems, all of which will affect how someone responds to treatment and her quality of life.

The literature review found that complete decongestive therapy (CDT), also called complex decongestive therapy, may be the best type of specialized lymphedema treatment. CDT is an intensive program that combines a number of treatment approaches, including bandaging, compression garments, manual lymphatic drainage, exercise, and self-care. Many studies have demonstrated the effectiveness of CDT for improving lymphedema symptoms such as swelling and pain.

The results strongly suggest that lymphedema treatment needs to be flexible and continually monitored and adjusted to make sure quality of life remains good.

In a separate literature review, the researchers found that pneumatic pumps, also called intermittent pneumatic compression therapy, can be a good supplemental treatment for people with limited or no access to medical care because the pumps can be used at home. A pneumatic pump is a machine that has an inflatable sleeve or vest-like garment attached to it, with multiple chambers (like balloons) that inflate one after the other to stimulate the flow of lymph in the right direction.

More research is needed to say for sure which individual treatments are most effective, in what combinations, and in which situations.

If you’re scheduled to have breast cancer surgery, be sure to ask your doctor about your risk of lymphedema and any steps you can take to lower that risk. If you’ve already had surgery and have been diagnosed with lymphedema, it’s a good idea to talk to your lymphedema therapist about how the lymphedema and treatments are affecting your quality of life. Together you can develop a treatment plan that is effective and makes the most sense for your unique situation.

You can learn much more about how lymphedema happens, the risk factors for lymphedema, steps you can take to minimize that risk, and lymphedema treatments in the Breastcancer.org Lymphedema section.

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