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Types of Lymphedema

Lymphedema is a chronic, meaning long-term, condition that occurs when lymph, also known as lymphatic fluid, pools in a person’s legs, arms, hands, feet, or other body parts.

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Lymph moves excess fluid and other substances away from cells in the body. When a problem arises with the body’s lymphatic system, lymph builds up and causes swelling that can lead to changes in a person’s skin and tissues. Over time, skin in the affected area can become tough and scaly.

The type of lymphedema you have depends on the cause. An inherited condition or genetic mutation can lead to primary lymphedema. Secondary lymphedema, which is much more common, is acquired. In other words, people develop it as a result of damage to the lymphatic system.

Primary Lymphedema

Lymphedema that you are born with or that develops as a result of an inherited genetic trait is known as primary or hereditary lymphedema. It can develop within the first two years of life, in or around puberty, or after age 35.

Primary lymphedema means that there is a problem with how a person’s lymphatic system developed, how it functions, or both. The typical flow of lymph through the lymphatic system gets blocked, leading to swelling in soft tissue under the skin. Swelling is often seen in a person’s lower limbs, although other areas of the body may be affected as well.

Primary and secondary lymphedema can look the same. Your doctor may ask about your family’s medical history to help determine whether the condition runs in your family. Diagnostic imaging can also be useful in identifying the source of the blockage.

Secondary Lymphedema

Secondary lymphedema is swelling that develops as a result of damage to the body’s lymphatic system. This damage can be due to injury, an obstruction in a lymph vessel, infection, trauma, or disease.

Having cancer or being treated for cancer are risk factors for developing secondary lymphedema. This condition may develop immediately or years later.

Much like a kink in a garden hose, if a tumor is pressing on or squeezing your lymph vessels—the tiny tubes that carry lymph through the body—it can disrupt the usual flow of lymph. Likewise, when cancer cells invade these vessels or travel to the lymph nodes—the organs that filter lymph—the lymphatic system cannot operate as intended, and fluid begins to build up in the surrounding soft tissue.

Cancer treatments such as those that require surgery or radiation are frequent causes of secondary lymphedema. Swelling can develop, for example, after surgery to remove lymph nodes or radiation therapy, which may also damage lymph vessels.

Breast cancer treatment is a common cause of secondary lymphedema. People with breast cancer who have a type of surgery called axillary lymph node dissection, in which lymph nodes are removed from the armpit, are at greater risk for developing lymphedema than those who have sentinel lymph node biopsy, in which only a few nodes are removed.

Having surgery, radiation, or both for other types of cancer, such as prostate cancer, endometrial cancer, head and neck cancer, lymphoma, and melanoma, is also associated with an increased risk of secondary lymphedema.

Managing and preventing lymphedema symptoms involves a variety of strategies, including lifestyle changes, noninvasive therapies, rehabilitation and counseling, exercise, and sometimes surgery. As a first step, doctors typically recommend nonsurgical therapies. Our lymphedema physical therapists, who are part of Rusk Rehabilitation, use manual treatments as well as compression garments and bandaging to help drain lymph fluid.

Our Research and Education in Lymphedema

Learn more about our research and professional education opportunities.