Lymphedema

Approved by the Lineagotica Editorial Board, 08/2017

Lymphedema is the abnormal buildup of fluid in soft tissue due to a lymphatic system blockage. The lymphatic system helps fight infection and other diseases by carrying lymph throughout the body. Lymph is a colorless fluid containing white blood cells. Lymph may also be called lymphatic fluid.

Lymph travels through the body 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 makes them swell.

Most often, lymphedema affects the arms and legs. It is more common for people who have received treatment for breast cancer or cancers that affect the urinary tract, bladder, kidneys, prostate, testicles, or penis. For people receiving cancer treatment to the head and neck, 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

  • Hardened skin, or skin that does not indent when pressed

  • Thicker skin

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

  • Small 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 slowly and are not always easy to detect. Sometimes the only symptoms may be heaviness or aching in an arm or leg. Other times, 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 the symptoms so they do not get worse. Because swelling is sometimes 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 removing 1 or more lymph nodes under the arm to check for cancer. This can cause lymphedema in the arm.

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

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

The risk of lymphedema increases with the number of lymph nodes and lymph 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 the symptoms. 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 using an imaging method called 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 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 possible cancer recurrence.

  • Using other tools to diagnose lymphedema. These include perometry, which uses infrared light beams, or a bioimpedance spectroscopy, which measures electrical currents flowing through body tissues.

It is also important to make sure another illness is not causing the swelling. Your 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. Lifting 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. Lifting 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 palliative care or supportive care. Talk with your health care team about any lymphedema symptoms you experience. Make sure to bring up any new symptoms or a change in your symptoms.

Lymphedema treatments:

  • Reduce swelling

  • Prevent it from getting worse

  • Prevent infection

  • Improve the appearance of the affected body part

  • Improve the person’s ability to function

Although treatment can help control lymphedema, it currently does not have a cure. Your doctor may recommend a certified lymphedema therapist (CLT). The CLT can assess your condition and develop a treatment plan, which may include:

  • Manual lymphatic drainage (MLD). MLD is a specialized technique that involves gentle skin massage. It helps blocked lymphatic fluid drain properly into the bloodstream and may 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 should be replaced every 3 to 6 months.

  • Complete decongestive therapy (CDT). This is also known as complex decongestive therapy. It 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 tell you how to perform the necessary techniques yourself at home and how often to do them. Ask your doctor for a referral.

  • Skin care. Lymphedema can increase the risk of infection. So 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 health care team.

  • Elevation. Keeping your affected limb elevated helps to reduce swelling and encourage fluid drainage through the lymphatic system. However, it is often not practical to hold 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 from 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 resulting 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 developing lymphedema. Also, try the following tips:

  • Maintain a healthy weight. If you are overweight, take positive steps to manage your weight after a cancer diagnosis. This 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 of developing head and neck lymphedema, don’t wear tops with a tight neckline. For those at risk of developing leg lymphedema, protect your feet by wearing closed shoes. Avoid flip-flops and sandals. For those at risk of arm lymphedema, avoid wearing tight clothing and jewelry that pinches or squeezes your arm or hand, like a tight sleeve or bracelet. This can cause the fluid to build up.

  • Limit time in extreme heat or cold. Avoid hot tubs or saunas. Limit hot showers to less than 15 minutes. Do not apply a heating pad or ice to swollen areas.

  • Know when to seek medical care. Call your health care team if you have any of the following signs of infection.

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

    • Skin that is hot to the touch

    • Skin redness, swelling, or pain

Related Resources

More Information

ASCO Answers: LymphedemaDownload Lymphedema (PDF), a 1-page (front and back) printable overview of lymphedema, including its causes, diagnosis, and options for treatment and management; words to know; and questions to ask the health care team. Order printed copies from the ASCO Store