Life After Cancer: Lymphedema
Lymphedema is a buildup of fluid in soft tissue that causes swelling. 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 can also happen in the face, neck, chest, belly (abdomen), groin, 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 tubelike vessels and small organs called lymph nodes. The system carries lymph 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 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 vessels around them that are near the cancer are often removed during surgery or treated with radiation. Both of these 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. So 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, as well as the face, groin, head and neck, chest, or abdomen. It depends on which part of the body was treated for cancer. It's important to treat lymphedema right away. If left untreated, the swelling can get worse. It can lead to other problems, such as infection, pain, skin sores, and decreased movement in 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 and/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, largely because of advances in breast cancer treatments. And most women learn what to watch for and are given exercises and self-care tips to start right after surgery to help lower their risk.
Other cancers linked to lymphedema
Lymphedema is linked to treatment for many types of cancer. These include prostate, head and neck, and pelvic cancers (like those in the bladder, testicles, uterus, or cervix), as well as melanoma and lymphoma. The swelling depends on the part of the body treated. For instance, surgery or radiation to treat tumors in the belly or pelvis can cause swelling in the genitals, belly, and one or both legs. Swelling in the face, mouth, or eyes can be caused by treatment for a head or neck cancer.
As with any type of lymphedema, knowing what to watch for and getting help right away are key.
Symptoms of lymphedema
Lymphedema symptoms depend on the part of your body that was treated and can include:
A feeling of fullness or heaviness
Skin that feels hard, stiff, or tight
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 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're 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 to learn more about what you can do to help reduce your 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. 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, like rash, redness, pain, hot to touch, swelling, fever, or itching. Get treatment right away at the first sign of infection.
Avoid constriction. 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 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 to get to or stay at that weight. Being obese (meaning you have a body mass index (BMI) of 30 or higher), or being overweight (BMI of 25 to 29) and gaining weight after treatment are linked to a higher risk for 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
There are no medicines to treat lymphedema. Instead, 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 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 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. 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).
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 burns by wearing sunscreen and using gloves when cooking or doing housework. 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, like fever, redness, warmth, or fluid leaking, call your 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. Do this before getting shots, having blood drawn, having an IV (intravenous) line put in, or having your blood pressure taken. If at all possible, these shouldn't 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. Ask to see a certified lymphedema therapist (CLT) to learn more about lymphedema and get help preventing or managing it.
When to call your healthcare provider
Call your 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
© 2022 The StayWell Company, LLC. All rights reserved. This information is not intended as a substitute for professional medical care. Always follow your healthcare provider's instructions.