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Lymphedema is a potential side effect of breast cancer surgery and radiation therapy that can appear in some people during the months or even years after treatment ends.

Lymph is a thin, clear fluid that circulates throughout the body to remove wastes, bacteria, and other substances from tissues. Edema is the buildup of excess fluid. So lymphedema occurs when too much lymph collects in any area of the body. If lymphedema develops in people who’ve been treated for breast cancer, it usually occurs in the arm and hand, but sometimes it affects the breast, underarm, chest, trunk, and/or back.

Why does lymphedema happen? 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 has most likely moved into to 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.

If you already have lymphedema but don’t remember hearing much about it during breast cancer treatment, you’re not alone, says Dr. Marisa Weiss, chief medical officer of “I can say from experience that the time right after diagnosis, when you are considering options and planning treatment, is a blur. When you are feeling so anxious and overwhelmed, it is hard to listen, understand, and decide. So even if lymphedema gets mentioned during this time, you may not remember it. Or it may not come up because the focus is really on getting you well. So if lymphedema does develop later on, it can feel like yet another insult to the body, one that many women weren’t fully prepared for. The good news is that women can learn how to manage it and lead normal lives.”

Although there’s no way to know for sure whether you’ll develop lymphedema after breast cancer, you can help yourself by learning more about it. Know your risk factors, take steps to reduce your risk, and be aware of early symptoms. Left untreated, lymphedema can worsen and cause severe swelling and permanent changes to the tissues under the skin, such as thickening and scarring.

Adding to the frustration some people feel is the conflicting advice about how to prevent and manage lymphedema — perhaps you’ve encountered some of it! There’s still much more research to be done before we fully understand this condition. Also, many doctors don’t have a great deal of experience with lymphedema. Realize that you may need to take charge and find your way to an experienced lymphedema therapist.

There are steps you can follow to lower your risk of lymphedema or manage the condition if you’ve already been diagnosed. Here you can read more about:

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The medical experts for Lymphedema are:

Jane Armer, PhD, RN, FAAN, professor at the University of Missouri’s Sinclair School of Nursing and Director of Nursing Research at its Ellis Fischel Cancer Center. An expert on the measurement and management of lymphedema after breast cancer, Dr. Armer is a member of the Medical Advisory Committee of the National Lymphedema Network (NLN). She has chaired the NLN's Research Committee and serves on the Board of Directors of the Lymphology Association of North America (LANA). Dr. Armer is one of the founding leaders of the American Lymphedema Framework Project.

Andrea Cheville, MD, MSCE, associate professor of physical medicine and rehabilitation at Mayo Clinic, Rochester, MN, who specializes in the supportive care needs of people at all stages of cancer, with a focus on treatment-related lymphedema. Before joining Mayo Clinic, Dr. Cheville directed the cancer rehabilitation and lymphedema program at the University of Pennsylvania. She is a Board member of the Lymphology Association of North America (LANA) and the National Lymphedema Network’s (NLN) Medical Advisory Committee.

Linda T. Miller, PT, DPT, CLT, clinical director of the Breast Cancer Physical Therapy Center, Ltd., which for 20 years has guided the rehabilitation of women with breast cancer in the Philadelphia area. Dr. Miller specializes in treating lymphedema and other complications of breast cancer surgery. She developed Recovery in Motion, Ltd., a breast cancer rehabilitation program, and has taught many clinicians nationwide how to use it. Dr. Miller has published several articles on post-operative breast cancer rehabilitation and lymphedema.

Kathryn Schmitz, PhD, MPH, professor of epidemiology at the University of Pennsylvania’s Perelman School of Medicine, and an expert on how physical activity can help in the prevention, treatment, and rehabilitation of chronic diseases, mainly obesity and cancer. She has conducted a number of important studies on the role of exercise in breast cancer rehabilitation and its effect on lymphedema risk, including the Physical Activity and Lymphedema Trial (PAL).

Nicole Stout, MPT, CLT-LANA, Senior Rehabilitative Services Practice Leader at Kaiser Permanente, Mid Atlantic Region, where she follows each patient during and after treatment to assess lymphedema risk and initiate treatment as early as possible. In addition to patient care, she works on collaborative research projects with the National Institutes of Health focused on the upper-body side effects of breast cancer treatment. Ms. Stout is also an instructor at the Norton School of Lymphatic Therapy, where she teaches lymphedema management courses nationally and internationally. She has lectured and published frequently on breast cancer-related lymphedema.

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