Lymphedema is swelling that occurs when lymph fluid can’t flow normally and builds up in the soft tissues of a limb. Lymphedema usually occurs in parts of the body where lymph nodes have been removed or damaged by cancer treatment. These areas include the underarm (called axilla), neck, groin or pelvis. The risk of lymphedema increases with the number of lymph nodes that are affected.
Lymph fluid is clear, yellowish fluid that contains nutrients, lymphocytes (a type of white blood cell) and antibodies. Lymph fluid travels throughout the body in lymph vessels. Lymph nodes sit along the lymph vessels. Their job is to filter the lymph fluid.
Doctors usually classify lymphedema based on how the skin reacts to the touch, if swelling goes down when the limb is elevated and if the skin is scarred or has changed texture. They give lymphedema a grade or stage from 1 to 3, usually as a Roman numeral (I, II or III). They use these grades or stages to plan treatment.
Grade or stage
The skin indents when pressed.
Swelling goes down when the limb is elevated.
There is no visible scarring.
The skin doesn’t indent when pressed.
Swelling doesn’t go down when the limb is elevated.
The skin has visible moderate to severe scarring.
The skin has hardened and doesn’t react to touch.
The affected limb has swelled in size and volume.
The skin has changed texture.
Lymphedema can be caused by:
People who have lymph nodes under the arm removed as part of breast cancer treatment are at risk of developing lymphedema in that arm. Lymphedema can develop in the legs after treatment for different types of cancer, including lymphoma, melanoma or uterine, prostate, vulvar or ovarian cancers.
Symptoms can vary depending on the grade or stage of the lymphedema. Symptoms of lymphedema include:
Your doctor will try to find the cause of lymphedema. This usually involves asking questions about your health history, including past illnesses and treatments. Your doctor will do a physical exam because lymphedema usually has obvious signs. This may include measuring the distance around, or circumference of, the swollen arm or leg and comparing it to the other arm or leg.
You may also need to have the following imaging tests if your doctor can’t tell what is causing the lymphedema based on the physical exam:
Find out more about these tests and procedures.
Once the cause and grade or stage of lymphedema is known, your healthcare team can suggest ways to treat it. Treatment may include a combination of the measures given below.
Unfortunately, some damage to the lymph system is permanent. Treatments for lymphedema are intended to:
Proper skin care can help prevent infection. It can also prevent lymphedema from getting worse and keep your skin from drying and cracking.
Keep your skin clean by bathing regularly. Be sure to test the water temperature because limbs with lymphedema may not feel temperatures as well as normal. Avoid extreme hot or cold such as heating pads or cold packs. Heat can make lymphedema worse so check with your healthcare team before you use saunas, steam baths or hot tubs.
Wear sunscreen to avoid sunburns, especially to the affected limbs. Wear long sleeves and long pants if you need to be in the sun.
Wear gloves when you garden or cook.
Keep your hands, feet and cuticles soft by using lotion at least once a day. Clip toenails straight across and file your fingernails. Do not cut or tear cuticles. Keep your feet clean and wear cotton socks. Change your socks as soon as possible if they get wet. Avoid walking barefoot.
Wear loose-fitting jewellery and clothing that doesn’t have tight elastic cuffs or waistbands.
Avoid pet scratches and insect bites.
Use a thimble when sewing.
Use an electric razor for shaving.
Treat cuts or burns on the limb quickly. Clean the area, cover it with an antibacterial ointment and apply a clean bandage. Change the bandage as often as necessary to avoid infection.
Don’t put pressure on the arm or leg. For example, don’t carry a purse on the treated side and don’t cross your legs or ankles when sitting or lying. Avoid having blood pressure measured on the affected arm. If lymph nodes were removed from under both arms, switch arms each time you have your blood pressure checked.
Avoid having needle sticks of any type in the affected limb. This includes having a blood sample taken, an intravenous, an injection and acupuncture on the affected limb or in affected areas.
Compression garments are also called pressure garments, compression sleeves and lymphedema sleeves or stockings. They are made of elasticized fabric. They put a controlled amount of pressure on different parts of the arm or leg to help move lymph fluid and keep it from building up. The garment may need to be worn all day (during waking hours), when working or when you exercise. It is important to use compression garments during air travel because lymphedema can become worse at high altitudes.
Compression garments should only be worn when a doctor or physiotherapist recommends them. They are fitted to each person and you will be told how and when to wear them.
Exercise, including light and aerobic exercise, increases muscle tone and may help move lymph fluid out of the affected limb and reduce swelling.
Check with a healthcare professional, such as a physiotherapist, before beginning an exercise routine that includes vigorous, repetitive activities. You should wear a compression garment during exercise if you have lymphedema.
Bandaging or wrapping a swollen limb helps the lymph vessels move lymph fluid along. After lymph fluid is moved out of a swollen limb, wrapping or bandaging the limb may help prevent fluid from building up in the area again. Talk to your physiotherapist about the proper way to bandage or wrap the limb.
Keeping the affected limb elevated, or raised up, may help the lymph fluid drain from the limb and lessen swelling. However, keeping an arm or leg elevated for a long period of time is often not practical.
Manual lymph drainage (MLD), or manual lymph therapy (MLT), is a special kind of light massage. It is usually done by someone with special training in treating lymphedema. Your therapist can also teach you how to do it yourself.
During MLD, you or your therapist lightly rubs, taps and strokes the soft tissues of the body. This improves drainage from the limb by clearing out the main lymphatic pathways.
Complex decongestive therapy (CDT), or complex physiotherapy (CPT), is a combination of manual lymph drainage, skin care, compression bandaging, exercises and compression garments. These therapies are managed by a trained therapist. The therapist gives many treatments over a short time to help clear most of the swelling. Then you can continue the program at home to keep the swelling down.
Compression devices are pumps connected to a sleeve that wraps around the arm or leg. The device pumps air into the sleeve on and off during a timed cycle. This pumping action may help move fluid through the lymph vessels and veins so that it doesn’t build up. These devices may be helpful when used along with another type of therapy. They should be supervised by a trained professional because too much pressure could damage lymph vessels near the skin surface.
Being overweight is a risk factor for developing lymphedema. Extra body weight can also make lymphedema harder to control. You can lower your risk by having a healthy body weight. Eating well and being physically active can help you have a healthy body weight. If you are overweight, losing weight may lessen lymphedema.
Laser therapy may help to lessen lymphedema and skin hardness. The therapist uses a hand-held device to aim low-level laser beams at the area with lymphedema.
Lymphedema is not generally treated with medicines. Antibiotics may be given to prevent or treat an infection. Blood thinners and diuretics, which are drugs that increase urine production, are usually not helpful and may make the lymphedema worse.
Liposuction is a surgical procedure that sucks out fat deposits from specific areas of the body. It may be done to treat lymphedema in the area under the chin, which is called submental lymphedema. Fluid can build up in this area following treatment for head and neck cancer.
Liposuction has also had good results in lowering the volume of fluid in a limb in people with severe lymphedema related to breast cancer treatment. It is most effective when the fluid builds up in mostly fat and fibrous tissue in the swelling. However, if you have liposuction to treat lymphedema, you’ll need to wear a compression sleeve 24 hours a day indefinitely.
My favourite thing about Camp Goodtime is being able to hang out with other kids who have survived cancer. They know what is going on in your life and can help you get through it.
The Canadian Cancer Society is actively lobbying the federal government to establish a national caregivers strategy to ensure there is more financial support for this important group of people.