Lymphedema

Approved by the Cancer.Net Editorial Board, 05/2016

Lymphedema is the abnormal buildup of fluid in soft tissue due to a blockage in the lymphatic system. The lymphatic system helps fight infection and other diseases by carrying lymph, a colorless fluid containing white blood cells, throughout the body. It does so using a network of thin tubes called vessels. Small glands called lymph nodes filter bacteria and other harmful substances out of this fluid. But when the lymph nodes are removed or damaged, lymphatic fluid collects in the surrounding tissues and causes them to swell.

Most often, lymphedema affects the arms and legs. And it particularly arises in people who have received treatment for breast cancer or cancers that affect the urinary tract, bladder, kidneys, prostate, testicles, and penis. For people receiving cancer treatment to the head and neck region, the neck is the most common site of lymphedema. But it may also develop below the chin, in the face, and, less often, inside the mouth. Lymphedema may develop immediately after surgery or radiation therapy, or it may occur months or even years after cancer treatment has ended.

Symptoms of lymphedema

People with lymphedema in their arm or leg may experience the following symptoms:

  • Swelling that begins in the arm or leg

  • A heavy feeling in the arm or leg

  • Weakness or decreased flexibility

  • Rings, watches, or clothes that become too tight

  • Discomfort or pain

  • Tight, shiny, warm, or red skin

  • Skin that does not indent at all when pressed, or hardened skin

  • Thicker skin

  • Skin that may look like an orange peel (swollen with small indentations)

  • Small warts or blisters that leak clear fluid

Symptoms of head and neck lymphedema include:

  • Swelling of the eyes, face, lips, neck, or area below the chin

  • Discomfort or tightness in any of the affected areas

  • Difficulty moving the neck, jaw, or shoulders

  • Scarring (fibrosis) of the neck and facial skin

  • Decreased vision because of swollen eyelids

  • Difficulty swallowing, speaking, or breathing

  • Drooling or loss of food from the mouth while eating

  • Nasal congestion or long-lasting middle ear pain, if swelling is severe

Symptoms of lymphedema may begin very gradually and are not always easy to detect. Sometimes the only symptoms may be heaviness or aching in an arm or leg. But sometimes lymphedema may begin more suddenly. If you develop any symptoms of lymphedema, talk with your doctor as soon as possible. You will need to learn how to manage them so they do not get worse. Because swelling may be a sign of cancer, it is also important to see your doctor to be sure the cancer has not come back.

Causes of lymphedema

Lymphedema is usually a predictable long-term side effect of some cancer treatments. The most common causes of lymphedema in cancer survivors include:

  • Surgery in which lymph nodes were removed. For example, surgery for breast cancer often involves the removal of one or more nearby lymph nodes to check for cancer. And this can cause lymphedema to develop in the arm.

  • Radiation therapy or other causes of inflammation or scarring in the lymph nodes and vessels

  • Blockage of the lymph nodes and/or vessels by the cancer

The risk of lymphedema increases with the number of lymph nodes and vessels removed or damaged during cancer treatment or biopsies. Sometimes lymphedema is not related to cancer or its treatment. For instance, a bacterial or fungal infection or another disease involving the lymphatic system may cause this problem.

Diagnosing lymphedema

A doctor is often able to identify lymphedema by examining the affected area. But sometimes he or she will recommend additional tests to confirm a diagnosis, plan treatment, or rule out other causes of lymphedema. These tests may include:

  • Measuring the affected part of the body with a tape measure to monitor swelling

  • Placing the affected arm or leg into a water tank to calculate the volume of fluid that has built up

  • Creating a picture of the lymphatic system with lymphoscintigraphy. Although this is a reliable test, it is not commonly used.

  • Monitoring the flow of fluid through the lymph system using an ultrasound. This imaging test uses sound waves to create a picture of the inside of the body.

  • Having a computed tomography (CT or CAT) scan or magnetic resonance imaging (MRI). These tests show the placement and pattern of lymph drainage and whether a tumor or other mass is blocking the flow of the lymphatic system. However, doctors do not usually use CT and MRI scans to diagnose lymphedema unless they are concerned about a potential cancer recurrence.

  • Other tests that can be used to diagnose lymphedema include perometry, which uses infrared light beams, and bioimpedance spectroscopy, which measures electrical currents flowing through body tissues.

It is also important to make sure another illness is not causing the swelling. So the doctor may perform other tests to rule out heart disease, blood clots, infection, liver or kidney failure, or an allergic reaction.

Stages of lymphedema

Doctors describe lymphedema according to its stage, from mild to severe:

Stage 0. Swelling is not yet visible even though damage to the lymphatic system has already occurred. Most people do not have any symptoms at this stage. And it may exist months or even years before swelling occurs.

Stage I. The skin indents when it is pressed, and there is no visible evidence of scarring. Elevating the affected limb often helps reduce the swelling.

Stage II. The skin does not indent when it is pressed, and there is moderate to severe scarring. Elevating the affected limb does not help the swelling.

Stage III. The skin has hardened, the affected body part has swollen in size and volume, and the skin has changed texture. Stage III lymphedema is permanent.

Managing and treating lymphedema

Relieving side effects is an important part of cancer care and treatment. This is called symptom management or palliative care. Talk with a member of your health care team about any lymphedema symptoms you experience, so you can begin treatment as soon as possible. This should include any new symptoms or a change in symptoms.

Treatments for lymphedema are designed to reduce swelling, prevent it from getting worse, prevent infection, improve the appearance of the affected body part, and improve the person’s ability to function. Although treatment is able to control lymphedema, there is currently no cure. You may want to ask your doctor to recommend a certified lymphedema therapist (CLT). A CLT is a health professional who specializes in managing lymphedema. The therapist can assess your condition and develop a treatment plan, which may include:

  • Manual lymphatic drainage (MLD). MLD is a specialized technique that involves a type of gentle skin massage to help blocked lymphatic fluid drain properly into the bloodstream. This may help reduce swelling. For best results, you should begin MLD treatments as close to the start of lymphedema as possible. A member of your health care team can refer you to a CLT trained in this technique.

  • Exercise. Exercising usually improves the flow of the lymphatic system and strengthens muscles. A lymphedema therapist can show you specific exercises that will improve your range of motion. Ask your doctor or therapist when you can start exercising and which exercises are right for you.

  • Compression. Non-elastic bandages and compression garments, such as elastic sleeves, place gentle pressure on the affected area. This helps prevent fluid from refilling and swelling after decongestive therapy (see below). There are several options, depending on the location of the lymphedema. All compression devices apply the most pressure farthest from the center of the body and less pressure closer to the center of the body. Compression garments must fit properly and be replaced every three to six months.

  • Complete decongestive therapy (CDT). CDT, also known as complex decongestive therapy, combines skin care, manual lymphatic drainage, exercise, and compression. A doctor who specializes in lymphedema  or a CLT should perform CDT. The therapist will also teach you how to perform the necessary techniques yourself at home and will tell you how often to do them. Ask your doctor for a referral.

  • Skin care. Because lymphedema can increase the risk of infection, it is important to keep the affected area clean, moisturized, and healthy. Apply moisturizer each day to prevent chapped skin. Avoid cuts, burns, needle sticks, or other injury to the affected area. If you shave, use an electric razor to reduce the chance of cutting the skin. When you are outside, wear a broad-spectrum sunscreen that protects against both UVA and UVB radiation and has a sun protection factor (SPF) of at least 30. If you do cut or burn yourself, wash the injured area with soap and water and use an antibiotic cream as directed by your doctor or nurse.

  • Elevation. Keeping an affected limb elevated often helps reduce swelling and encourages fluid drainage through the lymphatic system. However, it is often not practical to maintain an elevated position for a long time.

  • Low-level laser treatments (LLLT). A small number of clinical trials have found that LLLT could provide some relief of lymphedema after removal of the breast, particularly in the arms.

  • Medications. Your doctor may prescribe antibiotics to treat infections or drugs to relieve pain when necessary.

  • Physical therapy. If you have trouble swallowing or other issues that result from lymphedema of the head and neck, you may need physical therapy.  

Reducing your risk of lymphedema

Research continues to look into what factors cause lymphedema and what people can do to lower their personal risk. Talk with your doctor if you have concerns about your personal risk of developing lymphedema.

  • Maintain a healthy weight. If you are overweight, taking positive steps to manage your weight after a cancer diagnosis may help lower your risk of developing lymphedema.

  • Change your position. Avoid standing or sitting for a long time. While sitting, do not cross your legs. Prop yourself up with pillows in bed. An upright position improves lymph drainage.

  • Wear loose-fitting clothes. If you are at risk for developing head and neck lymphedema, don’t wear tops with a tight neckline. For those at risk for developing leg lymphedema, avoid tight shoes and socks, and protect your feet by wearing closed shoes, not flip-flops or sandals. For those at risk for arm lymphedema, avoid wearing tight clothing and jewelry that pinches or squeezes your arm or hand, like a tight sleeve or bracelet does. This can cause the fluid to build up.

  • Limit time in extreme heat or cold. Avoid hot tubs or saunas, and limit hot showers to less than 15 minutes. Also, don't apply a heating pad or ice to swollen areas.

  • Have vaccinations, other injections, and IVs given in your unaffected arm. You should also avoid having blood drawn and your blood pressure taken in your affected arm. Tell your doctor or nurse you are at risk for developing lymphedema.

  • Know when to seek medical care. Call your doctor or nurse if you have any of the following signs of infection:

      • Temperature higher than 100.5 degrees Fahrenheit (F) or 38 degrees Celsius

      • Skin that is hot to the touch

      • Skin redness, swelling, or pain

More Information

Survivorship

Fear of Treatment-Related Side Effects

Cancer.Net Podcasts: After Breast Cancer—Preventing Lymphedema, Leg Swelling After Cancer Treatment, and Expert & Patient Perspectives on Lymphedema

Side Effects of Surgery

Related Resources

National Cancer Institute: Lymphedema

National Lymphedema Network

Lymphology Association of North America: Find a LANA Certified Therapist