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What is Lymphedema? An Article by Zoe Hemenway

Excessive swelling distorting the knee and lower leg
Chart illustrating the location of nodes within the breast.

Nodes protect against lymph, a fluid containing white blood cells, building up in the body’s soft tissues. Lymph nodes act as filters and are important to the proper functioning of the immune system.

Lymphedema is a chronic condition caused by an abnormal buildup of fluid. The fluid build-up leads to swelling, usually in the arms or legs.  Damage to or removal of the lymph nodes or vessels causes the condition.

            There are two types of Lymphedema, primary and secondary. The Primary Lymphedema diagnosis designates those individuals born without lymph vessels or with lymph node abnormalities.  A Secondary Lymphedema designation comes from damage to the flow of lymph through the lymphatic system. Causes include anything from an infection to cancer treatments.

In the United States, one to two million people have a Primary Lymphedema diagnosis.  Two to three million people have secondary lymphedema. Worldwide the estimated number of individuals with Lymphedema is between 180 to 250 million.  Organizations consider the estimates low because of difficulty diagnosing and detecting it.

        Individuals undergoing Cancer treatment have risk factors for lymphedema. While surgery or radiation treatment for any cancer can cause lymphedema, it is mostly associated with breast cancer, prostate cancer, pelvic cancers, lymphoma, melanoma, and head and neck cancers. 30% of breast cancer survivors who had a complete mastectomy (a whole breast removed) including underarm lymph nodes removed risk development of lymphedema. The number and type of lymph nodes removed or damaged is a factor whether lymphedema develops.

Chart illustrating the location of nodes within the breast.

            Kathy Bates, an award-winning actress, is the national spokesperson for the Lymphedema Education & Research Network. Ms. Bates regularly speaks about her painful struggle with lymphedema. A two-time cancer survivor, she developed breast cancer after having a double mastectomy including removal of 22 lymph nodes. “I began to feel symptoms just as soon as I woke up from the operation,” Bates explained. Lymphedema can occur within days, months, or years after a lymphatic injury. Bates wears compression garments on her arms to help prevent swelling. Individuals with Lymphedema use specially designed compression garments (usually on their arms or legs). These garments apply pressure and compression to keep swelling down. Individuals at risk for lymphedema may also wear compression socks or arm garments to prevent it.





            There is no cure for Lymphedema and diagnosing it can be tricky. Doctors must do a thorough physical exam to rule out any other possibilities for the swelling. They do a thorough history and go over surgeries or treatments, and current medications.  Lymphoscintigraphy (sentinel lymph node mapping) is a diagnostic method to check the lymph system for disease. These diagnostics help medical personnel find cancer in the lymph nodes diagnose diseases like lymphedema. An MRI (highlighting different body parts) is another tool used to diagnose Lymphedema. Doctors compare the size of the affected limb to its counterpart to see differences.

While there is no cure, there are treatments helping patients manage lymphedema.

Specially designed compression garments are helpful to manage swelling.

Other treatments include:  

  • Massaging the skin,
  • Exercising regularly and completing specific exercises,
  • Maintaining a healthy diet,
  • Avoiding heavy lifting and tight clothes,
  • Taking precautions against infections - such as washing your hands regularly, wearing gloves while doing housework, cleaning cuts well, etc., and taking precautions when during doctor’s visits.
  • Taking blood pressure on the non-effected or less affected arm and
  • Avoiding injections or blood draws when possible.

            Taking proper care of yourself and the affected limbs can result in the limbs being restored to a manageable size. These treatments can also prevent lymphedema from progressing further. When lymphedema is left untreated it can lead to decreased function and mobility, as well as chronic infections. As long as it’s managed properly, those affected can continue to live a relatively normal life.

For More Information and Sources:

The Lymphedema Education & Research Network

The Cleveland Clinic: Lymphedema: Management and Treatment

The National Cancer Institute

The American Cancer Society

The National Library of Medicine