Lymphedema is abnormal swelling that can develop in the arm, hand, breast, or torso as a side effect of breast cancer surgery and/or radiation therapy. Lymphedema 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.
Lymphedema usually develops gradually, and you may feel an unusual sensation — such as tingling or numbness — that comes and goes before any visible swelling occurs. Other common symptoms include achiness, feelings of fullness or heaviness, puffiness or swelling, and decreased flexibility or tightness in the hand, arm, chest, breast, or underarm areas. Early treatment of lymphedema is important, so you should tell your doctor if you experience any of these symptoms.
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 the 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 that lymph moves through. 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 Breastcancer.org. “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.”
There’s no way to know for sure whether you’ll develop lymphedema after breast cancer, but 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.
You may feel frustrated by conflicting advice about how to prevent and manage lymphedema. 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. 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:
The medical experts for Lymphedema are:
- Jane Armer, Ph.D., RN, FAAN, professor at the University of Missouri’s Sinclair School of Nursing and Director of Nursing Research at its Ellis Fischel Cancer Center
- Andrea Cheville, MD, MSCE, associate professor of physical medicine and rehabilitation at Mayo Clinic, Rochester, MN
- Linda T. Miller, PT, DPT, CLT, clinical director of the Breast Cancer Physical Therapy Center, Ltd.
- Kathryn Schmitz, Ph.D., MPH, professor of epidemiology at the University of Pennsylvania’s Perelman School of Medicine
- Nicole Stout, MPT, CLT-LANA, Senior Rehabilitative Services Practice Leader at Kaiser Permanente, Mid Atlantic Region
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