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Managing Lymphedema After Cancer

Lymphedema is swelling that may occur after cancer surgery when lymph nodes are removed. It may also occur after radiation to the lymph nodes. Lymphedema can start months or even many years after cancer treatment. It's an ongoing (chronic) condition that has no cure. But steps can be taken to help reduce your risk of lymphedema. And if it does happen, there are ways to relieve symptoms. If left untreated, lymphedema can get worse.

Talk to your healthcare team about your lymphedema risk and what you should watch for. Lymphedema is easier to treat and treatment is more likely to work if it's treated right away.

Understanding lymphedema

The lymphatic system helps the body fight infection. It's made up of a network of small vessels all over the body. Lymph fluid travels through these vessels. Many tiny organs called lymph nodes are scattered along the vessels. These nodes filter lymph fluid to help fight infection.

During surgery for cancer, nearby lymph nodes are often removed. Sometimes radiation is used to treat nearby lymph nodes as part of cancer treatment. This is because cancer cells can break away from the first tumor, get into the lymph vessels, and collect and grow in lymph nodes. This is 1 of the ways cancer can start to spread (metastasize) to other parts of your body.

Surgery and radiation both disrupt the lymph network. Lymph fluid can't flow the way it should, which can lead to fluid buildup and swelling. This is lymphedema. The part of the body with lymphedema depends on what area was treated. For instance, treating lymph nodes in the groin can cause lymphedema in the genitals and leg. Damaging underarm or chest nodes can cause lymphedema in the neck, chest, arm pit, and arm on the affected side. When the lymph nodes are treated for head and neck cancers, it can lead to swelling in the face and neck. Swelling can get worse over time and become severe. Skin sores, infections, or other problems can develop.

Lymphedema treatment

Once lymphedema starts, there's no way to cure it. There are no medicines to treat lymphedema. Instead, the most common treatment is complete decongestive therapy (CDT). This is a set of methods used together to reduce your symptoms.

CDT is done by certified lymphedema therapists. To help see how well treatment is working, the affected area may be measured before and after CDT.

CDT involves one or more of the following:

  • Manual lymphatic drainage. This is a kind of massage that uses gentle pressure to help move lymph out of the areas where it's collecting. It's done by a therapist or nurse with special training. It can also be learned and done at home.

  • Intermittent pneumatic compression. This uses a device to apply and relieve pressure to the arms or legs. Sleeves are put over the arms or legs. A pump fills the sleeves with air. Then the air is let out. This happens many times in a row.

  • Compression bandages. These are stretchy, padded fabric bandages worn on the parts of the body with lymphedema. This may include bandages, tape, or other types of compression wraps. They help support your tissues so lymph can flow more freely. And they help keep lymph fluid from building up.

  • Therapeutic exercises. Some kinds of exercise may help your symptoms. These may include aerobic exercise, such as brisk walking. They may also include range of motion exercises or weight-lifting exercises that build muscle. Exercises are tailored to each person and depend on the kind of lymphedema.

  • Skin and nail care. Proper care of your skin and nails can help prevent infection. See the “Preventing Infection for Life” section below for more on this.

  • Compression garments. These are worn as often as needed and often for life. These include sleeves, gloves, stockings, undershirt, or other types of special clothes. They squeeze or compress parts of the body to help prevent lymph buildup. You may wear these during the day or at night when you’re asleep. They're carefully fitted for each person.

    Person pulling a compression stocking onto leg.

Tips for living with lymphedema

  • Don't get too cold or too hot. This can cause your skin to swell and dry out. It can also cause more fluid to build up. Don’t use hot tubs, saunas, ice packs, or a heating pad.

  • Don't wear anything that squeezes the affected area. This may cause more swelling. Wear loose clothing and jewelry. If your legs are affected, don’t wear tight socks or undergarments, and don't cross your legs when you sit. This can block lymph drainage.

  • Don't gain weight. This can make your symptoms worse.

  • Tell your healthcare providers. Tell all your healthcare providers that you have lymphedema and where it is. If your arms are affected, talk to your lymphedema therapist about whether it's okay for you to get shots, get an IV, or have your blood pressure taken in that arm.

Preventing infection for life

An important part of staying healthy with lymphedema is preventing infections in the swollen areas. Lymphedema makes it easier for germs (bacteria) to grow in those areas. To help prevent infection:

  • Keep your skin clean. Use lotion to keep it soft and prevent chapping, peeling, and cracking.

  • Be extra careful when shaving and use a clean razor on clean skin.

  • Check your skin regularly for cuts, sores, bug bites, or other problems.

  • Use an antibacterial ointment if you have a cut or sore.

  • Don't pick at, bite, or cut the skin around your fingernails. Use a cuticle stick to push your cuticles back.

  • Trim your fingernails and toenails straight across to prevent ingrown nails.

  • Prevent skin burns by wearing sunscreen and using gloves when cooking or doing household work.

  • Wear shoes that fit well and don't cause blisters.

  • Use an insect repellent so you don't get bug bites when outdoors. 

Working with your healthcare team

Get regular checkups and report any changes right away. See a specially trained lymphedema therapist to learn more about lymphedema and to get help managing it.

When to call your healthcare provider

Call your healthcare provider right away if you have:

  • Fever of 100.4ºF ( 38ºC) or higher, or as directed by your healthcare provider

  • Signs of infection such as red blotches, warmth, or pain

  • Sudden increase in swelling, pain, or redness

  • Changes in the affected area, such as:

    • The skin feels tight, thick, or leathery

    • Jewelry or shoes feel tighter than usual

    • A feeling of heaviness

    • Decreased movement in a joint; for instance, you can't make a tight fist

Know what problems to watch for and when you need to call your healthcare providers. Also know what number to call after office hours and on weekends and holidays.

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