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Life After Cancer: Lymphedema 

Lymphedema is a buildup of lymph fluid that causes swelling. It can happen if lymph nodes or lymph vessels are removed or damaged. Surgery and radiation to treat cancer can cause this damage. The lymph fluid may collect and cause swelling in the treated parts of the body.

Lymphedema can happen months or even years after cancer treatment. It’s an ongoing (chronic) condition that has no cure. But you can do things to help reduce your risk for lymphedema. And there are ways to reduce or ease symptoms if it happens. If left untreated, lymphedema can get worse. It can lead to other problems, such as infections. 

Talk with your healthcare provider about your risk for lymphedema and what you can do to help keep it from starting or getting worse.

What is the lymphatic system? 

The lymphatic system is a network of tiny vessels and small organs called lymph nodes. The system carries lymph around the body. Lymph is a clear fluid that contains a few blood cells.

The lymphatic system is part of your immune system. It helps protect and maintain the health of your body by filtering and draining lymph and cell waste products away from each body region. The lymphatic system also helps the body fight infection. 

How lymphedema happens 

During treatment for cancer, lymph nodes and the vessels around them that are near the cancer are often removed by surgery. Or they may be treated with radiation. This scars and damages them. Radiation is done because it’s common for cancer to spread to nearby lymph nodes.

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

Lymphedema can affect 1 or both arms or legs, the face, the groin, the head and neck, or the belly (abdomen). It depends on which part of the body was treated for cancer. Swelling can get worse over time and cause problems. You can get sores or other skin problems. Affected areas are more likely to become infected. 

After cancer treatment that removes or damages lymph nodes, you are at risk for lymphedema for the rest of your life. 

Breast cancer and lymphedema 

Lymphedema is a higher risk after breast cancer treatment. During treatment, some or all of the lymph nodes under the arm may be removed or treated with radiation. These lymph nodes are called the axillary lymph nodes. They drain the lymphatic vessels from the arms, hands, and most of the breast, chest, neck, and underarm area. 

A mild type of lymphedema can occur within a few days after breast surgery. It usually lasts a short time. Lymphedema can also occur about 4 to 6 weeks after surgery or radiation and then go away over time. The most common type of lymphedema is painless. It may slowly develop 18 to 24 months or more after surgery. It does not get better without treatment. Once lymphedema starts, there is no way to cure it. 

Symptoms of lymphedema 

Lymphedema can occur in an arm, leg, groin, chest, head, neck, or armpit area. Symptoms can include:

  • Swelling

  • A feeling of fullness or heaviness in the area

  • Skin that feels stiff or tight

  • Weakness

  • Aching or pain

  • Skin that looks red

  • Trouble bending or moving a joint in your fingers, wrist, elbow, shoulder, or ankle

  • Shoes, clothing, bra, or jewelry feels tight 

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 changes, let your 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 are at risk for lymphedema but do not have it, the tips below may help reduce your risk. 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. You also may want to ask about seeing a lymphedema specialist to learn more about what you can do to try to reduce risk of lymphedema.

  • Prevent infection and inflammation. Wash, treat, and cover any skin wounds, even a small cut, scratch, or burn. Keep your skin clean. And use lotion to keep it moist. Check your skin 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.

  • Keep active. Ask your healthcare team about the type of exercise that’s best for you. A lymphedema specialist can help you learn safe exercises.

  • Manage your weight. Talk with your provider about what’s a healthy weight for you. Ask them for help with how to get to or stay at that weight. Being obese (BMI 30 or higher) or overweight (BMI 25 to 29) and gaining weight after treatment are linked to a higher chance of lymphedema.

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

How lymphedema can be treated

No medicines are available to treat lymphedema. Instead, the most common treatment is complete decongestive therapy (CDT). This is a set of methods used together to help reduce your symptoms. CDT is done by certified, trained 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 1 or more of these:

  • Manual lymphatic drainage. This is a kind of massage. It uses gentle pressure to help move lymph out of areas where it is 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 messaging motion. Then the air is let out. This happens over and over again for a set amount of time.

  • Compression bandages. Stretchy, padded fabric wrapping may be put on the part of the body with lymphedema. This wrap may include bandages, tape, or other types of compression garments. They help support your tissues so lymph can flow more freely. They help prevent fluid lymph 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, undershirt, or other types of special clothes. They compress or gently squeeze parts of the body to help prevent lymph buildup. You may wear these during the day, or at night when you are asleep.

  • Therapeutic exercises. Some kinds of exercise may help your symptoms. These may include aerobic exercise, such as brisk walking. And they may also include gradual weightlifting exercises that build muscle.

  • Skin and nail care. Good care of your skin and nails will help prevent infection (see below). 

Managing lymphedema 

If you have lymphedema, you will 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 burns by wearing sunscreen and using gloves when cooking or doing housework. 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, like redness or fluid leaking, call your healthcare provider.

  • Stay away from excess heat or cold. Hot and cold temperatures can cause the skin to swell and dry out. It can also cause fluid to build up. Be careful around hot objects to prevent burns. Don’t use hot tubs, saunas, or a heating pad. Cold can also damage skin. Don’t use ice packs. Protect your skin with warm clothing in the winter.

  • Try not to gain weight. This can make symptoms worse.

  • Tell your healthcare providers. Tell your healthcare providers about your lymphedema before getting shots, having blood drawn, having an IV put in, or having your blood pressure taken. If at all possible, these should not be done in an affected arm. 

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, 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. See a trained lymphedema therapist to learn more about lymphedema and to get help managing it.

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 healthcare provider

Online Medical Reviewer: Lu Cunningham
Online Medical Reviewer: Richard LoCicero MD
Date Last Reviewed: 5/1/2019
© 2019 The StayWell Company, LLC. 800 Township Line Road, Yardley, PA 19067. All rights reserved. This information is not intended as a substitute for professional medical care. Always follow your healthcare provider's instructions.
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