For People with Lymphedema

Lymphedema that is related to cancer is most commonly caused by lymph node removal during surgery for cancer, radiation to the lymph node area, and/or by the tumor itself which might block part of the lymph system. Increased white blood cells due to leukemia or an infection can also limit lymph flow and cause lymphedema.

Acute (short-term) lymphedema

Lymphedema can start soon after treatment for cancer. This can be called acute, temporary, or short-term lymphedema. It usually starts within days, weeks, or a few months (up to a year) after treatment, is usually mild, and goes away on its own or with some mild treatments.

Even though this type of lymphedema usually goes away on its own over time, you should tell your doctor about it right away. The swollen area may look red and feel hot, which could be a sign of a blood clot, infection, or other problem that needs to be checked and treated.

If there are no other problems causing the swelling, short-term lymphedema might be treated by raising the arm or leg, or doing light exercises.

Chronic (long-term) lymphedema

This form of lymphedema develops over time. It may show up a year or more after cancer treatment. The swelling can range from mild to severe. The lymph fluid that collects in the skin and underlying tissues can be very uncomfortable. It can also keep nutrients from reaching the cells, interfere with wound healing, and lead to infections.

Lymphedema can be a long-term problem, but there are ways to manage it. The key is to know what to look for, and then to get help right away when you first notice signs and symptoms. Lymphedema can be treated, and it's more likely to respond to treatment if it’s diagnosed and treated early.

Treatment of lymphedema

When you have lymphedema, treatments can help reduce the swelling, keep it from getting worse, and decrease the risk of infection. Treatment is prescribed by your doctor, and you should talk to and be monitored by a certified lymphedema therapist (CLT). 

Some common types of treatment for lymphedema include:

Manual lymphatic drainage (MLD): This is a type of massage done by a specialist to move the extra fluid to other parts of the body and decrease the lymphedema.

Complete decongestive therapy (CDT): This treatment, also done by a specialist, involves skin care, MLD, special compression bandaging, exercises, and elevating the affected part of the body. Daily CDT is used to lower fluid volume as much as possible and can take a few weeks.

Intermittent pneumatic compression (IPC): This treatment is another form of compression that uses a device that fills with air and then deflates off and on (like a blood pressure cuff) to move the extra fluid out of the affected area.

Compression garment: A certified lymphedema specialist can measure you for a compression garment that fits just right. When the lymphedema is controlled as much as possible, for example after regular MLD or daily CDT, a compression garment is then used to help keep it under control.

Surgery: If the lymphedema can’t be controlled with the measures above, surgical procedures such as lymphatic bypass, lymph node transfer, or liposuction might be considered. These types of surgeries have their own possible complications, so they should be done at centers that are experienced in doing them for people with cancer.

Although most insurance companies will pay for lymphedema treatment, some don’t cover the cost of compression garments and dressings. Check with your health insurance company to see what's covered. 

Tips for people with lymphedema

• Avoid over-using your affected arm.
• Look closely at your body in front of a mirror. Compare both sides of your body and look for changes in size, shape, or skin color. Let your doctor or nurse know if you notice any of the signs or symptoms of worsening lymphedema.
• Practice good skin care. When you have lymphedema, your risk of infection is higher. Keep your skin clean and dry and use moisturizers regularly to keep your skin from cracking. Also, protect your body from the sun. Use a broad spectrum sunscreen that is labeled SPF of at least 30 and try to stay out of the sun between 10 a.m. and 4 p.m., when the ultraviolet (UV) rays are strongest.
• Ask to be referred to a certified lymphedema therapist. Be sure to check your health insurance to make sure lymphedema screening and therapy is covered.
• Be sure compression garments fit well and are worn properly. Do not use a poorly fitting compression garment under any circumstances. This may make lymphedema worse.
• If your arm starts to ache, lie down and raise it above the level of your heart.
• Regular exercise is a key part of lymphedema management, but be sure to talk to your doctor or therapist to learn what type of exercise program is right for you.
• It helps to talk to people who understand what you’re going through. Find support groups in your area, call us at 800-227-2345 or go to Lymphology Association of North America (LANA) online at www.clt-lana.org.

Tips if your arm has lymphedema and is swollen:

• Wear loose jewelry, clothing, bras, and gloves. Avoid anything that fits too tightly or puts pressure around your chest, arm, or wrist. Clothing and compression garments should be supportive and have smooth, even compression.
• Do not use shoulder straps when carrying briefcases and purses.
• Wear a loose-fitting bra with padded straps that don’t dig into your shoulder. Make sure underwires don’t put pressure on your breast or chest. After a mastectomy, use a lightweight prosthesis (breast form). A heavy prosthesis might put too much pressure on the area.
• Many doctors recommend that you have your blood pressure checked on the unaffected arm, if possible. If both arms are affected, blood pressure can be taken on your thigh. Or, you can ask that blood pressure be measured by someone using a hand pump and stethoscope rather than using a machine, as the machines often use high pressures for a longer time. You should also be careful with injections or blood draws. For more information on injections and blood draws, see For People at Risk of Lymphedema.

Tips if your lower body or leg has lymphedema and is swollen:

• Wear loose clothing. Avoid anything that fits too tightly or puts pressure around your waist, legs, or genitals, such as undergarments or pants with tight elastic bands.
• Wear well-fitting, closed shoes instead of sandals or slippers. Do not go barefoot.
• Keep your feet clean and dry. Wear soft protective socks (cotton or padded types). 
• Some people at risk of leg lymphedema might benefit from wearing a compression stocking when up and walking around. A compression stocking can help squeeze the lymph fluid through the remaining vessels before it builds up. The stocking must be well fitted to apply the right pressure while avoiding too much tightness near the top of the stocking. Ask your doctor, nurse, or therapist if you should be fitted for a compression stocking.
• Avoid socks or stockings with tight elastic bands.
• Try not to stand or sit in one place for too long (more than 30 minutes). Do not cross your legs when sitting.

What caregivers can do

• Watch the skin area for early signs of infection, like pus coming from a cut or scrape, rash, red blotches or streaks, swelling, increased heat, tenderness, chills, or fever. Call the health care team right away if you notice any of these symptoms.
• Help make the home environment safe from possible falls to prevent skin injury or fractured bones.
• If the patient has pets, keep the pets’ claws trimmed to avoid scratching the patient's skin.
• Avoid the patient being exposed to extreme temperatures. Ice packs or heating pads may damage skin tissue and increase fluid build-up, so talk to the doctor before using either of these.  

Call the health care team if ...

Call your doctor, nurse, physical therapist, or lymphedema therapist if you notice any of the signs or symptoms of lymphedema listed or any of these changes:

• Part of the affected area, such as an arm or a leg, feels hot, looks red, or swells up suddenly. These could be signs of infection (cellulitis) or a blood clot, and you might need treatment right away.
• You have a temperature that's not related to a cold or the flu, and that's above what's considered normal for you or above a certain level as instructed by the cancer care team.
• You have new pain with no known cause in the affected area.

To find a certified lymphedema therapist contact:

Lymphology Association of North America (LANA)
www.clt-lana.org

National Lymphedema Network (NLN)
1-800-541-3259
www.lymphnet.org