Life After Cancer: Lymphedema

Lymphedema is a buildup of lymphatic (lymph) fluid in soft tissue that causes swelling. The buildup is not normal. It can happen if lymph nodes or lymph vessels are removed or damaged by cancer treatment. Surgery and radiation can cause this damage. The fluid collects and causes swelling in the treated part of the body. It's most common in the arms and legs. But it can also happen in the face, neck, chest, belly (abdomen), groin, genitals, and other parts of the body.

Lymphedema can happen months or even many years after cancer treatment. Once it starts, it's often an ongoing (chronic) problem. There are things you can do to help reduce your risk for lymphedema. And there are ways to reduce symptoms if it happens.

Talk with your healthcare provider about your risk for lymphedema based on your cancer treatment. Ask what you can do to help keep it from starting or getting worse. Know what to watch for so you can get treatment right away.

What is the lymphatic system?

The lymphatic system is a network of tiny tube-like vessels and small organs called lymph nodes. The system carries lymph fluid around your body. Lymph is a clear fluid that contains white blood cells.

The lymphatic system is part of your immune system. It helps protect your body and keep it healthy. It filters and drains lymph fluid from every part of your body. The lymphatic system helps fight infection and clean up cell waste products.

How lymphedema happens

Lymph nodes and the lymph vessels around them that are near the cancer are often removed during surgery or treated with radiation. Both of these treatments can scar and damage the lymphatic system in the treated part of the body.

When lymph vessels and nodes are gone or don’t work, it disrupts the normal flow of lymph fluid. Instead of lymph draining into your body as it should, the fluid builds up in the fatty tissues under your skin. This causes swelling. This swelling is lymphedema. The changes in the flow of lymph also keep the lymph from being filtered the way it should. This can increase the risk for infections. It can also interfere with wound healing in the affected areas.

Lymphedema can happen in one or both arms or legs. It can also happen in the face, groin, head and neck, chest, belly, or genitals. It depends on which part of the body was treated for cancer. It's important to treat lymphedema right away. The swelling can get worse if it's not treated. It can lead to problems such as infection, pain, and skin sores. It can make it harder to move the swollen area.

Breast cancer and lymphedema

Lymphedema is often linked to breast cancer treatment. This is because some or all of the lymph nodes and vessels under the arm are usually removed or treated with radiation. These lymph nodes are called the axillary lymph nodes. They drain lymph from the arms, hands, and most of the breast, chest, neck, and arm pit.

A mild type of lymphedema is common within a few days of breast surgery. It usually lasts a short time. Lymphedema can also happen a few weeks after surgery or radiation and then go away over time. Sometimes lymphedema doesn't go away. Or it may slowly develop years after treatment. It doesn't hurt and may be hard to notice.

Lymphedema is less common today than it was in the past. This is largely because of advances in breast cancer treatments. And most people learn what to watch for. They are given exercises and self-care tips to start right after surgery to help lower their risk.

Symptoms of lymphedema

Lymphedema symptoms depend on the part of your body that was treated. They can include:

Swelling
A feeling of fullness or heaviness
Skin that feels hard, stiff, or tight
Weakness
Aching or pain
Skin that looks red or shiny
Itching, tingling, or burning
Trouble bending or moving a joint
Shoes, clothing, bra, or jewelry feels tight
New problems swallowing, talking, or breathing
Vision or hearing changes

If you have any of these symptoms, contact your healthcare provider right away. Something else may be causing these changes and you may need treatment. If the cause is lymphedema, treatment needs to be started right away to keep it from getting worse.

Can lymphedema be prevented?

Not all experts agree on what might help reduce risk. But one of the most important things you can do is watch for signs of lymphedema. Compare the sides of your body. Watch for changes. If you notice any, let your healthcare provider know right away. The sooner any swelling is treated, the better the chances of reducing it and keeping it from getting worse.

If you're at risk for lymphedema but don't have it, the tips below may help reduce your risk. Remember: You are at risk for lymphedema for the rest of your life. So make these tips part of your regular habits:

Get follow-up care after cancer treatment. See your healthcare provider on a regular basis for checkups. Ask about your risk for lymphedema and what to watch for. You also may want to ask about seeing a lymphedema specialist. They can tell you more about what you can do to help reduce your risk.
Prevent infection and inflammation. Wash, treat, and cover any skin wounds. Do this for even a small cut, scratch, or burn. Keep your skin clean. Use lotion to keep it soft. And wear sunscreen. Check your skin and nails often. Prevent injury to the at-risk area. If you travel, include a small first aid kit. Watch for signs of infection such as rash, redness, pain, hot to touch, swelling, fever, or itching. Get treatment right away at the first sign of infection.
Don't wear tight clothing. Don't wear tight clothes, socks, or underwear in the treated area. Don't wear tight jewelry. Wear well-fitting shoes and padded socks.
Stay active. Ask your healthcare team about the type of exercise that’s best for you. A certified lymphedema specialist (CLS) can help you learn safe exercises. A physical therapist can teach you stretching, range-of-motion, and strengthening exercises.
Manage your weight. Talk with your healthcare provider about what’s a healthy weight for you. Ask them for help to get to or stay at that weight. Being obese or being overweight and gaining weight after treatment is linked to a higher risk for lymphedema.

Ask your healthcare team about your personal risk factors for lymphedema. Ask them about any extra care you may need to take.

How lymphedema can be treated

There are no medicines to treat lymphedema. The most common treatment is complete decongestive therapy (CDT). This is a set of treatments used together to help reduce your symptoms. CDT is done by certified, trained lymphedema therapists. Your arms or legs may be measured before and after CDT to see how well the treatment is working.

Lymphedema treatment most often includes one or more of these:

Manual lymphatic drainage. This is a kind of massage. It uses gentle pressure to help move lymph fluid out of areas where it's collecting.
Intermittent pneumatic compression. This uses a device to apply and ease pressure to the arms or legs. Sleeves are put over the arms or legs. A pump fills the sleeves with air in a massaging motion. Then the air is let out. This happens over and over again for a set amount of time.
Compression bandages. Stretchy, padded fabric wrappings may be put on the part of the body with lymphedema. These may include bandages, tape, or other types of compression garments. They help support your tissues so lymph can flow more freely. They also help keep fluid from building up and squeeze fluid out of the area.
Compression garments. These are worn as often as needed, for life. These include sleeves, gloves, stockings, undershirts, or other types of special clothes. They compress or gently squeeze parts of the body to help keep fluid from building up. You may wear these during the day or at night while you sleep.
Therapeutic exercises. Some kinds of exercise may help ease your symptoms. These may include aerobic, flexibility, and stretching exercises. They may also include gradual weightlifting or resistance exercises that build muscle and improve strength. Talk with your healthcare provider or lymphedema therapist before starting any exercise program.
Skin and nail care. Good care of your skin and nails will help prevent infection (see below).

Managing lymphedema

If you have lymphedema, you'll need to make sure the swollen area stays healthy and prevent infection. Lymphedema can’t be cured, but it can be managed. Any swelling should be checked by a healthcare provider right away. Here are some things you can do:

Protect your skin. Small injuries such as a cut, burn, or insect bite in the area with lymphedema are more likely to cause swelling and skin infection. Take special care to prevent injury. Prevent sunburns by wearing sunscreen. Use gloves when cooking or doing housework to prevent burns. Be careful around any hot objects. Use an insect repellent to prevent bug bites when outdoors. Moisturize dry skin. Wear protective gloves when doing outdoor chores, such as gardening or lawn work. Check your skin regularly for cuts, sores, bug bites, or other problems. Take care of any wounds right away. Clean them, put on antibiotic cream, and keep the area covered as it heals. If you have any signs of infection such as fever, redness, warmth, or fluid leaking, call your healthcare provider.
Stay away from extreme heat or cold. Hot and cold temperatures can cause the skin to swell and dry out. It can also cause fluid to build up. Don’t use hot tubs, saunas, or a heating pad. Cold can also damage skin. Don’t use ice packs on the treated area. Protect your skin with warm clothing in the winter.
Get to or stay at a healthy weight. This can help keep lymphedema from getting worse.
Tell your healthcare providers about your lymphedema. Some healthcare providers may tell you to not get shots, have blood drawn, have an IV (intravenous) line put in, or have your blood pressure taken in the affected arm. Ask your healthcare provider if this approach is right for you.

For arm lymphedema:

Don’t wear tight sleeves, cuffs, wristwatches, or jewelry.
Don't pick at or cut the skin around your fingernails.
Trim your fingernails straight across to prevent ingrown nails.
Don’t carry heavy bags with the affected arm.

For leg lymphedema:

Don’t wear tight socks, underwear, hose, tights, or pants.
Don’t cross your legs when you sit. This can block lymph drainage.
Don’t walk around without shoes. This is to help keep you from injuring your feet.
Wear shoes that fit well and don’t cause blisters.
Trim your toenails straight across to prevent ingrown nails.

Working with your healthcare team

Get regular checkups and tell your healthcare team about any changes right away. Ask to see a certified lymphedema therapist (CLT) to learn more about lymphedema and get help preventing or managing it. Find out if your insurance plan covers lymphedema care by a CLT, the number of CLT visits allowed, and special garments and treatments.

When to call your healthcare provider

Call your healthcare provider if you have any of these:

Swelling that gets worse
Rash, blisters, or other skin changes in the affected area
Skin that becomes red, painful, or warm to the touch
A wound in the area that increases in pain, is warm, drains fluid, or has red streaks
Fever of 100.4°F (38°C) or higher, or as directed by your provider
Difficulty breathing