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 using a network of vessels (thin tubes). Small glands called lymph nodes filter bacteria and other harmful substances out of this fluid. However, when the lymph nodes are removed or damaged, lymphatic fluid collects in the surrounding tissues, causing them to swell.
Most often, lymphedema affects the arms and legs, particularly in patients treated for breast or genitourinary cancers (cancers that affect the urinary tract, bladder, kidneys, prostate, testicles and penis). However, lymphedema can also occur in other parts of the body, including the head and neck. 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.
Types of lymphedema
Lymphedema may be acute (short-term) or chronic (long-term). Acute lymphedema usually develops a few days or weeks after treatment (such as radiation therapy or surgery) and lasts less than six months. As the body heals and normal lymph fluid flow resumes, the swelling usually goes away. Chronic lymphedema occurs when the lymphatic system changes and can no longer meet the body's demands for fluid drainage. This may happen immediately after surgery or radiation therapy or may occur months or even years after cancer treatment has ended.
People with lymphedema in an arm or leg may experience the following symptoms:
- Slow, painless swelling that begins in the hands or feet and progresses toward the trunk (middle of the body)
- "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
- Hyperkeratosis (thicker skin)
- Skin that may look like an orange peel (swollen with small indentations)
- The development of 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
- Fibrosis (scarring) 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 chronic middle ear pain, if swelling is severe
If you are concerned about any of these symptoms, talk with your doctor. Because swelling also may be a sign of cancer, it is important to see your doctor to be sure that the cancer has not come back (recurred).
The most common causes of lymphedema in people living with cancer include:
- Surgery that removes lymph nodes or blocks lymph nodes and/or vessels from carrying lymphatic fluid into the bloodstream. The risk of lymphedema increases with the number of lymph nodes and vessels that are removed or damaged during cancer treatment.
- Radiation therapy or other injury to the lymph nodes
- Metastatic cancer (cancer that has spread from where it began to another part of the body)
- Bacterial or fungal infection
Sometimes, lymphedema is not related to cancer or its treatment. For instance, an infection or another disease involving the lymphatic system may cause this problem.
Sometimes a doctor is able to diagnose lymphedema just by performing an examination. However, in some cases tests may be needed to confirm a diagnosis, plan treatment, or rule out other causes of lymphedema. These tests may include:
- Measuring the affected part of the body to monitor swelling
- Placing the affected arm or leg into a water tank to calculate the volume of fluid that has built up
- Monitoring the flow of fluid through the lymph system using an ultrasound (an imaging test that uses sound waves to create a picture of the inside of the body)
- Producing a picture of the lymphatic system with lymphoscintigraphy that shows the pattern of lymph drainage. This is a reliable test for confirming a diagnosis of lymphedema.
- Having a computed tomography (CT or CAT) scan (imaging test that creates a three-dimensional picture of the inside of the body with an x-ray machine) or magnetic resonance imaging (MRI, test that uses a magnetic field instead of x-rays to produce detailed images of the body). These tests show the placement and pattern of lymph drainage and whether a tumor or other mass is obstructing the flow of the lymphatic system.
It is also important to make sure another illness is not causing the swelling. Therefore, the doctor may perform other tests to rule out heart disease, blood clots, infection, liver or kidney failure, or an allergic reaction.
Doctors describe lymphedema according to its grade, a system that classifies the lymphedema from mild (Grade I) to severe (Grade III).
Grade I. This means that the skin indents when it is pressed and there is no visible evidence of scarring. Elevating the affected limb often helps reduce the swelling.
Grade II. This means that 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.
Grade III. This means the skin has hardened, the affected body part has swollen in size and volume, and the skin has changed texture. Grade III lymphedema is irreversible (will not go away).
Management and treatment
Relieving side effects, also called symptom management, palliative care, or supportive care, is an important part of cancer care and treatment. Talk with a member of your health care team about any lymphedema symptoms you experience, including any new symptoms or a change in symptoms.
Treatments for lymphedema are designed to reduce swelling, prevent it from getting worse, prevent infection, and improve the use and appearance of the affected body part. You may want to ask your doctor to recommend a therapist who specializes in managing lymphedema. Lymphedema therapists are physical therapists, occupational therapists, or other health professionals who specialize in helping patients manage lymphedema. The therapist can assess your condition and develop a treatment plan, which may include:
Skin care. Because chronic lymphedema increases the risk of infection, it is important to keep the affected area clean, moisturized, and healthy.
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.
Massage. A specialized technique called manual lymphatic drainage may help reduce swelling. This technique involves a special type of gentle skin massage to help blocked lymphatic fluid drain properly into the bloodstream. For best results, begin massage treatments as close to the onset of lymphedema as possible. A member of your health care team can refer you to someone 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.
Compression. Non-elastic bandages and compression garments (such as elastic sleeves) that are worn at home often place gentle pressure on the affected area to help drain excess fluid and prevent it from refilling and swelling. 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.
Complete digestive therapy (CDT). CDT combines skin care, manual lymphatic drainage, exercise, and compression. A clinician or therapist who specializes in lymphedema 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.
Low level laser treatments (LLLT). A small number of clinical trials (research studies involving volunteers) have found LLLT could provide some relief of lymphedema after a mastectomy (removal of the breast), particularly in the arms.
Medications. Your doctor may prescribe antibiotics to treat infections or drugs to relieve pain when necessary. Diuretics (medicines that lower the amount of water in the body) are not usually recommended.
Physical therapy. If functional problems result from lymphedema of the head and neck, you may need other types of therapy, such as therapy to address trouble swallowing.
The following tips can help reduce your chances of experiencing lymphedema or decrease the severity if it does occur.
Exercise. Regular exercise helps improve lymph drainage. However, in some people, strenuous exercise can cause or worsen swelling. Ask your doctor or therapist when you can start exercising, which exercises are right for you, and whether you should wear a compression garment during exercise.
Maintain a healthy weight. If you are overweight, losing weight can lower your risk of developing lymphedema.
Change your position. Avoid standing or sitting for prolonged times. While sitting, do not cross your legs. Prop yourself up with pillows in bed. An upright position improves lymph drainage.
Protect your skin. 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.
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, wear clothing and jewelry that is loose and does not pinch or squeeze your arm or hand, like a tight sleeve or bracelet does, because 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 the swollen area.
Know when to seek medical care. Call your doctor or nurse if you have any signs of infection: a fever (temperature higher than 100.5 degrees F or 38 degrees C); skin that is hot to the touch; or skin redness, swelling, or pain.