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What You Should Know About Lymphedema

What is Lymphedema?


Lymphedema arises when either a loss of function or structural damage to the lymphatic circulation occurs, and is a common side effect of breast cancer treatment, although it can be associated with other cancers, as well. The three stages of this condition range from reversible and easily treatable to permanent skin damage. While there is no cure, early diagnosis and treatment improves both the prognosis and the condition.

If your doctor has informed you that you have lymphedema, you probably have many questions and concerns about your diagnosis, what treatments you are likely to receive, and how to manage this condition.

Lymph is a clear fluid collected from body tissues that transports fats and proteins from the small intestine; removes bacteria, viruses, toxins, and certain proteins from tissues; and supplies white blood cells, especially lymphocytes, to the bloodstream to help fight infections and other diseases. Lymphedema is a clinical condition that arises when either a loss of function or structural damage to the lymphatic circulation occurs. The term "edema" means swelling. Hence, lymphedema literally means swelling due to the disruption of the flow of lymph fluid.

Congenital lymphedema, which is one of the primary forms, is a result of genetic or other inherited conditions that make an individual intrinsically prone to the condition. More common are secondary, acquired forms of lymphedema that arise as a result of cancer; cancer treatments such as radiation and chemotherapy; trauma; and infection. Secondary lymphedema can develop at any time after the causal surgery, infection, or trauma.

Stages of Lymphedema

Pre-Stage: Latency Stage

A healthy body can easily manage the body’s lymphatic load, which consists of proteins, water, cells, and fat. Ordinarily, a large functional reserve exists or the body can accommodate any extra lymphatic load. However, if lymph nodes are damaged by radiation or removed surgically, the body's capacity to process the extra volume is diminished, explains Jenifer Alavi, MPT, CLT (Certified Lymphedema Therapist), who is a physical therapist in North Wales, Pennsylvania. This is called pre-stage lymphedema, or the latency stage. Transport capacity is reduced, setting the stage for an overload of the lymphatic system. At this stage, lymphedema is readily reversible and easily treatable.

Early symptoms of lymphedema are progressive swelling or fullness in a limb, which is often accompanied by low-grade discomfort and sometimes overt pain. You may find it difficult to fit into clothing, or your watch might feel tight.

First Stage: Pitting Edema

If the latency stage is ignored or missed, pitting edema may occur. This is the first stage of lymphedema, which is also called reversible lymphedema. Symptoms resolve with elevation, but usually worsen during the day. By morning, the limb should return to normal size.

Second Stage: Spontaneously Irreversible Lymphedema

Progression of pitting edema and the start of connective tissue fibrosis occurs in the second stage of lymphedema, or spontaneously irreversible lymphedema. Skin hardens and no longer resolves upon waking. If skin is pressed upon, an indentation will remain.

Third Stage: Lymphostatic Elephantiasis

Stage three lymphedema, lymphostatic elephantiasis, is nonpitting edema. At this point the disease has progressed to the point where permanent skin changes appear very hard. It is difficult to grasp the skin of the affected area with two fingers.

Risks of Lymphedemoa

It is extremely challenging to predict who will develop lymphedema, partially because of each individual's distinct anatomical differences and the specific medical interventions that were performed.

In terms of risk factors, a number of genetic predispositions are just coming to light, says Stanley G. Rockson, MD, FACC, FACP, Allan and Tina Neill Professor of Lymphatic Research and Medicine, Chief of Consultative Cardiology, and Director at the Stanford Center for Lymphatic and Venous Disorders at Stanford University in Stanford, California. The greatest risk for lymphedema is posed by traumas to the body that can create structural or functional abnormalities. In the case of cancer treatments, the number of lymph nodes that are removed and the extensiveness and dose of the radiation determine the risk. For trauma patients, it depends on the extensiveness of the trauma or infection.

The types of cancer that are most associated with lymphedema are those that require the removal of large numbers of lymph nodes for staging or other purposes. The most common ones are breast cancer; gynecologic malignancies, including ovarian, cervical, and uterine cancers; prostate cancer; and malignant melanoma and sarcomas of various types.


The most important factors in diagnosing lymphedema are patient presentation at the time of visit, medical history, and physical examination (including measurements of the affected limbs), says Anne Elperin, MSN, NP, clinical nurse specialist at Dana-Farber Cancer Institute in Boston, Massachusetts. Other causes must be excluded, such as infection, tumor compression, or deep vein thrombosis.

Imaging procedures can confirm diagnosis. The most common technique is radionuclide lymphoscintigraphy, a nuclear medicine technique that images the function of the lymph system in a selected part of the body. Other supportive tests include a CT scan or MRI. "Some newer techniques are designed to detect early and preclinical cases of lymphedema, but they are not yet widely available," Dr. Rockson reports.


Although there is no cure for lymphedema, patients are encouraged to seek treatment at the first signs, because early diagnosis and treatment improves both the prognosis and the condition.

Patients are usually referred to a physical therapist and/or nurse by the diagnosing health care professional, which might be a general physician, internist, family physician, oncologist, or radiation oncologist.

Nurses generally work with the physician to determine the need for treatment and the patient's response. The physician continues to follow up with the patient but doesn't deliver the actual treatment.

Treatment depends on the cause of lymphedema, and typically involves physical techniques to try to manage the edema and optimize tissue health. Complex decongestive physiotherapy involves multiple sessions of lymphatic massage to the limb or area to mobilize the fluid and help it re-enter the circulation. Exercises, including arm elevation, are typically prescribed. Multilayer bandaging of the involved parts of the body during the acute treatment phase may reduce the size. During the maintenance phase, limbs are wrapped in compression garments to try and maintain the benefits achieved by the therapist.


Patients are advised to avoid anything that will increase the potential for inflammation or infection of the tissues where the body is at risk. This includes punctures of the skin, such as intravenous lines, blood draws from the involved limbs, and tattoos; sun damage or exposure that can lead to sun burn; extreme cold (which can cause rebound swelling or skin chapping) and heat above 105° (such as in a hot tub or sauna); prolonged compression of the tissues, such as wearing a garment that constricts part of the limb at risk; or having an automated blood pressure cuff on a area of the body where repeated measurements are taken over many hours (such as during surgery). Individuals with lymphedema are advised to wear gloves when gardening to prevent infection and not carry heavy objects on the affected side.

Because commercial airline carriers only pressurize cabins to 7,000 feet, many practitioners recommend that a patient wear a lymphedema compression garment for air travel to minimize, risk because flying seems to stimulate lymphedema.


Talk to your doctor about your risk for developing lymphedema and what precautions you can take to try to avoid this complication. Make sure you understand the warning signs of lymphedema so that you can alert your doctor as soon as possible if you experience any of these symptoms.

Steps you can take to avoid your risk of developing lymphedema:

  • Do not apply heat to the affected area.
  • Keep your skin and nails clean to avoid infection.
  • Avoid overexertion of the affected area during the healing process; keep it rested and elevated.
  • Protect yourself from injury, especially to the limb(s) most likely to be affected.
  • Do not wear tight clothing.
  • Avoid positions, movements, or activities that may constrict your circulation (carrying heavy bags, crossing legs, tight socks or jewelry).