What is the lymph system?

Our bodies have a network of lymph vessels and lymph nodes. These vessels drain and carry watery, clear lymph fluid much the same way that veins collect blood from all parts of the body to carry it through the body. Lymph fluid contains proteins, salts, and water, as well as white blood cells, which help fight infections. In the lymph vessels, valves work with body muscles to help move the fluid through the body. Lymph nodes are small collections of tissue that work as filters for harmful substances and help us fight infection.

The lymph system

What is lymphedema?

Lymphedema is a build-up of lymph fluid in the fatty tissues just under your skin. This build-up causes swelling, most often seen in the arms or legs, though the face, neck, abdomen (belly), and genitals can also be affected. There are 2 types of lymphedema:

• Primary lymphedema is found in people born with genes that put them at an increased risk of developing lymphedema. This lymphedema is caused by lymph nodes or vessels that are missing or not working the way they should. This type of lymphedema is rare.

• Secondary lymphedema can be a result of cancer, cancer treatments, tumors, diseases, or anything that changes or damages the normal, healthy lymph system.

What causes lymphedema?

Any change in the structure of the lymph system puts a person at risk for lymphedema. For example, during surgery for cancer the doctor may remove some of the lymph nodes near the tumor to see if the cancer has spread. Some lymph vessels that carry fluid from the arms or legs to the rest of the body may also be removed because they are wrapped around the lymph nodes. Taking out lymph nodes and vessels changes the way the lymph fluid flows in that part of the body, making it harder for lymph fluid in the arms or legs to move to other parts of the body. If the remaining lymph vessels cannot remove enough of the fluid in the area, the excess fluid builds up and causes swelling. Radiation treatment can also affect the flow of lymph fluid in the arms or legs by causing scarring of the lymph nodes and vessels; this increases the risk for lymphedema, too.

The lymph fluid that collects in the tissues can be very uncomfortable. It can 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. There are also things you can do to try to prevent it.

Who gets lymphedema?

Lymphedema can become a problem after surgery or radiation treatment for any type of cancer, but it is most often linked to treatments for breast cancer, prostate cancer, pelvic area cancers (such as uterine, vulvar, or cervical cancer), lymphoma, and melanoma. Most often, lymphedema affects the arms or legs, but it can happen in other areas, too. If lymphedema occurs after breast cancer treatment, it can affect the breast and underarm, as well as the arm closest to the surgery. After cancer in the abdomen (belly) or pelvis has been treated, lymphedema may appear as swelling of the abdomen, genitals, or one or both legs.

Sometimes, the cancer itself can cause a blockage in the lymph system and cause lymphedema.

Infections that restrict lymph flow can also cause lymphedema.

When does lymphedema develop?

Lymphedema can start right after surgery. This is called temporary lymphedema. It is usually mild and goes away in 1 to 2 weeks. It can also happen 6 to 8 weeks after surgery or radiation. Again, this type of lymphedema usually goes away in a few weeks. The affected area may look red and feel hot. It’s treated by raising the arm or leg and taking medicines to reduce inflammation.

The more common form of lymphedema develops slowly over time. It may show up many months or even years after cancer treatment. The swelling can range from mild to severe. People who have many lymph nodes removed and/or radiation therapy may have a higher risk of developing lymphedema. But doctors do not fully understand why some patients are more likely to have problems with fluid build-up than others. Although we still have a lot to learn about lymphedema, there are ways that you can take care of yourself to reduce your chances of having future problems.

Signs of lymphedema

The signs of lymphedema may include:

• a full or heavy feeling in the area, like your arm, leg, belly, or genitals

• the skin in the area changes texture, and may feel tight or hard

• aching or discomfort in the area

• less movement or flexibility in nearby joints, such as your hand, wrist, or ankle

• trouble fitting into clothes in one area, such as the sleeve of your jacket, a pant leg, or your sock being tight

• your ring, watch, and/or bracelet feel tight but you have not gained weight

Early on, the skin usually stays soft and raising the affected limb may relieve the lymphedema. But over time, the swollen area may become hot and red and the skin hard and stiff.

If you have had lymph nodes removed or radiation treatment, 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. If you notice any of the signs listed above, and if they last for 1 to 2 weeks, call your doctor or nurse.

How to help prevent and control lymphedema

At this time there are no scientific studies to show that people can prevent lymphedema. Still, most experts say following these basic guidelines may lower your risk of developing lymphedema or delay its onset.

Try to avoid infections, burns, and injuries

Try to avoid infections, burns, or injuries to the treated area, and to the arm or leg just beyond it. Your body responds to these events by making extra fluid. When lymph nodes and vessels have been damaged or removed it is harder to get rid of this extra fluid, and this can trigger lymphedema.

• Keep the affected area clean. Careful skin care may reduce the risk of lymphedema by helping you avoid infections.

• Keep your hands, feet, and cuticles soft and moist by regularly using moisturizing lotion or cream. This will help keep your skin from chapping or cracking. Push your cuticles back with a cuticle stick rather than cutting them with scissors.

• Clean and protect any openings in your skin caused by cuts, scrapes, insect bites, hangnails, or torn cuticles by washing with soap and water. Then put an over-the-counter antibiotic cream or ointment on any openings and cover the area with a clean bandage. Check with your doctor, nurse, or pharmacist if you are not sure what to use. For burns, apply a cold pack or cold water for 15 minutes, then wash with soap and water and put on a clean, dry dressing.

• Watch for early signs of infection, such as pus coming from a cut or scrape, rash, red blotches, swelling, increased heat, tenderness, chills, or fever. Call your doctor right away if you think you may have an infection.

• Use an electric shaver to remove underarm and leg hair; it is less likely to cut or irritate the skin than a blade razor or hair removal cream.

• Use an insect repellent to avoid bug bites when outdoors. If a bee stings you in the affected area, clean and raise the limb, put ice on the sting, and call your doctor if there are signs of infection (see above).

• Avoid activities that irritate or chap your skin.

• Protect your body, especially treated areas, from sunburn. Use sunscreen that is labeled SPF 15 or higher and try to stay out of the sun during the hottest part of the day.

• If your arm is affected, use a long oven mitt to avoid oil splash burns when frying and steam burns from microwaved foods or boiling liquids.

• Your affected limb may not feel temperatures as well as it did in the past. Test bath water temperatures with an unaffected limb.

• Avoid extreme temperature changes, such as heat from hot tubs and saunas. And do not use heating pads on the affected areas. Heat can increase fluid build-up. Cold can also be a problem. It can cause rebound swelling as you warm up, and chapping of your skin.

If your arm is affected:

• Whenever possible, have your blood drawn, IVs, and shots given in your unaffected arm. Have flu shots and vaccinations in your unaffected arm or somewhere else. Let all the members of your health care team know that you are at risk for lymphedema.

• Wear protective gloves when doing household chores involving chemical cleansers or steel wool, gardening, yard work, and perhaps while washing dishes.

• Wear a thimble when sewing to avoid needle and pin pricks.

• Use oven mitts that cover your arms instead of hot pads.

• Keep pets' claws trimmed to avoid scratches.

If your legs are affected:

• Always 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).

• Dry the creases between your toes after bathing.

Try to avoid pressure or constriction

Constriction or squeezing of the limb may increase the pressure in nearby blood vessels. This can lead to increased fluid and swelling (much like water building up behind a dam.) Lymphedema also seems to happen with air travel, possibly because of the changes in cabin pressure. Tips include:

If your arm is affected:

• Wear loose jewelry, clothing, and gloves.

• Do not use shoulder straps when carrying briefcases and purses.

• Wear a loose-fitting bra with padded straps that do not dig into your shoulder.

• Do not have your blood pressure taken in the affected limb.

• On long or frequent flights, wear a compression sleeve on the affected arm when travelling. A well-fitted compression sleeve may help prevent swelling by helping to squeeze the lymph fluid through the remaining vessels before it builds up. But careful fitting is required, since any garment that is too tight near the top can actually reduce the lymph flow even more. Ask your doctor or physical therapist if you should be fitted for a sleeve to wear during air travel. You may also want to discuss ways to safely raise your arm above the level of your heart and exercise it during long flights.

If your legs are affected:

• Avoid socks, stockings, or undergarments with tight elastic bands. Wear shoes that fit well.

• Try not to stand or sit in one place for too long. Do not cross your legs when sitting.

• If you fly often or for long flights, wear a compression stocking on the affected leg when you travel by air. Ask your doctor or therapist about being fitted for this.

• Most people with leg lymphedema 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 fitted to apply the right pressure while avoiding too much tightness near the top of the stocking.

Try to avoid muscle strain

It’s important to use your affected limb for normal everyday activities so that you heal properly and regain strength. For example, you should use your arm to brush your hair and bathe. Using your muscles also helps drain lymph fluid from the limbs. If you’ve had surgery or treatment for cancer that has affected your lymph nodes, ask your doctor or nurse when you can begin to exercise and what type of exercises you can do. But keep in mind that overuse of the limb can cause injury and lymphedema in some people. It's a good idea to follow these tips:

• Use your affected arm or leg as normally as you can. Once you are fully healed, usually about 4 to 6 weeks after surgery or radiation treatment, you can begin to go back to the activities you did before your surgery.

• Exercise regularly but try not to over-tire your limb. Before doing any strenuous exercise (such as weightlifting, biking, or tennis) talk with your doctor, nurse, or physical therapist. They will help you figure out your goals and limitations so that you know what level of activity is right for you. Ask your doctor or physical therapist if you should be fitted for a sleeve or stocking to wear during strenuous activities.

• If your arm or leg starts to ache, lie down and raise it above the level of your heart.

• Avoid vigorous, repeated activities and heavy lifting or pulling.

• Use your unaffected arm or both arms as much as possible to carry heavy packages, groceries, handbags, or children.

• Watch for early signs of infection: pus, rash, red blotches or streaks, swelling, increased heat, tenderness, chills, or fever. Call your doctor right away if you think you have an infection.

When to call your doctor or nurse

• If you notice any swelling, with or without pain, that lasts for 1 to 2 weeks. This could be a sign that the cancer has returned or a sign of lymphedema.

• If any part of the affected area feels hot, looks red, gets tender (sore when touched), or swells suddenly. These could be a sign of infection and you may need antibiotics.

• If you have a temperature of 100.5° F or higher (taken by mouth) that is not due to a cold or flu.

• If you have any new pain in the affected area with no known cause.

Lymphedema treatment

If you are diagnosed with lymphedema, there are treatments to reduce the swelling, keep it from getting worse, and decrease the risk of infection. In most cases, the treatment is prescribed by your doctor and given by an experienced therapist.

Lymphedema should be treated by a physical therapist or other health care professional who has gone through special training. The treatment, often called complex decongestive therapy (CDT), includes skin care, massage, special bandaging, exercises, and fitting for a compression sleeve or stocking. Manual lymphatic drainage, or MLD, is a type of massage used along with skin care, compression therapy, and exercise to manage lymphedema.

Although most insurance companies will pay for lymphedema treatment, some do not cover the cost of compression garments and dressings. Check with your insurance company about coverage for these therapies.

Seeking and getting treatment early should lead to a shorter course of treatment to get your lymphedema under control.

Take care of yourself

Taking care of your whole body is important. Eat well and get to and stay at a healthy weight. Try to eat 5 or more servings of vegetables and fruits each day. Choose whole-grain foods instead of white flour and sugars. Try to limit meats that are high in fat. Cut back on processed meats like hot dogs, bologna, and bacon. If you drink alcohol, limit yourself to 1 or 2 drinks a day at the most. And don't forget to get some type of regular exercise. A good diet and regular exercise can help you stay at a healthy weight and give you more energy. Try to reduce the stress in your life and get enough sleep, too.

You also need people you can turn to for strength and comfort. Support can come in many forms: family, friends, cancer support groups, church or spiritual groups, online support communities, or one-on-one counselors. You may want to get support from others with lymphedema. It helps to talk to people who understand what you're going through. Call us or contact the National Lymphedema Network (see "Additional resources" below) to find support groups in your area.

You can't change the fact that you have lymphedema. What you can change is how you live your life -- taking good care of yourself, making healthy choices, and doing what you can to make your body and your mind feel as good as possible.

Additional resources

Lymphedema: Understanding and Managing Lymphedema After Cancer Treatment is a book you can buy from your American Cancer Society. Please call 1-800-ACS-2345 (1-800-227-2345) for cost and ordering information.

National organizations and Web sites*

Along with your American Cancer Society, other sources of information and support include:

American Physical Therapy Association (APTA)
Toll-free number: 1-800-999-2782
Web site: www.apta.org
A basic fact sheet regarding physical therapy and lymphedema can be found at http://www.oncologypt.org.

Lymphology Association of North America (LANA)
Telephone: 773-756-8971 (Illinois)
Web site: www.clt-lana.org
Web site lists therapists, nurses, and physicians who specialize in treating lymphedema.

National Lymphedema Network (NLN)
Toll-free number: 1-800-541-3259
Web site: www.lymphnet.org

*Inclusion on this list does not imply endorsement by the American Cancer Society.

No matter who you are, we can help. Contact us anytime, day or night, for cancer-related information and support. Call us at 1-800-ACS-2345 (1-800-227-2345) or visit www.cancer.org.

Last Medical Review: 03/05/2009
Last Revised: 03/05/2009