Why do I need to know about lymphedema?

Women who have been treated for breast cancer may be at risk for arm, breast, and chest swelling called lymphedema (limf-uh-dee-muh). Most women who have had breast cancer will not develop this side effect, but many will. The risk of lymphedema is higher for women who have surgery and radiation therapy to treat breast cancer.

Here we will talk about what lymphedema is, the steps you can take to lower your risk, and what signs you can look for. It is not possible to know who will get lymphedema. But there are things you can do to try to prevent it. And recognizing it early and starting treatment right away can help manage it.

What is the lymph system?

Our bodies have a network of lymph (limf) nodes and lymph vessels that collect watery, clear lymph fluid, much like veins collect blood from all parts of the body and 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 network of lymph nodes and vessels

What is lymphedema?

During surgery for breast cancer, the doctor removes at least one lymph node from the underarm area to see if the cancer has spread. Sometimes doctors remove more than one. When lymph nodes are removed, the lymph vessels that carry fluid from the arm to the rest of the body are also removed because they are wrapped around the nodes.

Removing lymph nodes and vessels changes the way the lymph fluid flows in that side of the upper body. This makes it harder for fluid in the chest, breast, and arm to flow out of this area. If the remaining lymph vessels cannot drain enough of the fluid from these areas, the excess fluid builds up and causes swelling, or lymphedema. Radiation treatment to the lymph nodes in the underarm can affect the flow of lymph fluid in the arm and breast area in the same way, further increasing the risk of lymphedema.

Lymphedema is a build-up of lymph fluid in the fatty tissues just under your skin. It usually develops slowly over time. The swelling can range from mild to severe. It can start soon after surgery or radiation treatment. But it can also begin months or even many years later. Women who have many lymph nodes removed and women who have had radiation therapy to the breast and/or underarm area may have a higher risk of getting lymphedema.

Doctors still do not fully understand why some patients are more likely to have problems with fluid build-up than others. They expect that in the future fewer women will develop lymphedema because

• breast surgery and treatment keep getting more conservative (that is, more women are treated with lumpectomy);

• research advances have led to methods like the sentinel lymph node biopsy (a newer procedure which allows the surgeon to remove only 1 or 2 lymph nodes); and

• newer studies are looking at finding which lymph nodes drain the arm before surgery so they can be preserved when possible. This procedure is called axillary reverse mapping.

There is still much to be learned about lymphedema, but there are ways that you can care for your arm and breast area to reduce your chances of having future problems. Once lymphedema has started, it cannot be cured. But early and careful management can reduce symptoms and help keep it from getting worse.

How to reduce swelling after surgery or radiation

Right after surgery, the affected arm or breast area may swell. This swelling is usually short-term and slowly goes away over the next 6 to 12 weeks. These tips may help ease the swelling during this time:

• Use your affected arm as you normally would to do things like comb your hair, bathe, dress, and eat.

• Raise your affected arm above the level of your heart 2 or 3 times a day and keep it there for 45 minutes. Lie down to do this, and fully support your arm. Put your arm up on pillows so that your hand is higher than your wrist and your elbow is a little higher than your shoulder.

• Exercise your affected arm while it is supported above the level of your heart by opening and closing your hand 15 to 25 times. Repeat this 3 to 4 times a day. This exercise helps reduce swelling by pumping lymph fluid out of the arm through the undamaged lymph vessels.

• To get back your normal shoulder and arm movement, begin exercising your affected arm about a week after your surgery. But talk to your doctor, nurse, or physical therapist before doing any exercises. For most people, normal range of motion returns within 4 to 6 weeks.

• If you have radiation therapy after surgery, it may cause arm swelling or make the swelling last longer than it normally would after surgery. It may also cause some swelling in the chest and breast toward the end of the treatment. In most cases, this swelling is short-term and will slowly go away. During treatment and up to 18 months afterward, you should do simple stretching exercises each day to keep full movement in your chest, arm, and shoulder.

How to help prevent and control lymphedema

At this time there are no scientific studies to show that women 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 infection

Your body responds to infection by making extra fluid to fight the infection. Removal of or damage to lymph nodes and vessels makes it harder to move this extra fluid, and this can trigger lymphedema. Good hygiene and careful skin care may reduce the risk of lymphedema by helping you avoid infections. Follow these tips to help you care for the hand and arm on the side of your body that had surgery:

• Whenever possible, have your blood drawn, IVs, and shots given in your unaffected arm. Also have flu shots and vaccinations in your unaffected arm or somewhere else, like the hip. Tell your doctor or nurse that you are at risk for lymphedema.

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

• Keep your arm clean. Clean and protect any skin openings caused by cuts, scratches, insect bites, hangnails, or torn cuticles. First, wash it with soap and water. Then use an over-the-counter antibiotic cream or ointment and cover the area with a clean bandage. Check with your doctor, nurse, or pharmacist if you are not sure what to use.

• Wear protective gloves when doing household chores that use chemical cleansers or steel wool, when gardening or doing yard work, and maybe when washing dishes.

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

• Use an electric shaver to remove underarm hair; it may be 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 you are stung by a bee in the affected arm, clean and put ice on the area, raise the arm, and call your doctor or nurse if the sting shows any signs of getting infected.

• Avoid extreme cold. It can cause rebound swelling as you warm up and chapping of your skin, which may lead to infection.

Try to avoid burns

Like infections, burns can cause the body to make extra fluid that may build up and cause swelling when lymph nodes have been removed or damaged. Tips to avoid burns include:

• Protect your chest, shoulder, and arm from sunburn. Use sunscreen labeled SPF 15 or higher and try to stay out of the sun during the hottest part of the day.

• Use oven mitts that cover your arms.

• Avoid oil splash burns from frying and steam burns from microwaved foods or boiling liquids.

• Avoid high heat, such as from hot tubs and saunas. And do not use heating pads on the affected areas. Heat can increase fluid build-up.

Try to avoid constriction

Constriction or squeezing of the arm may increase the pressure in nearby blood vessels. This may lead to increased fluid and swelling (much like water building up behind a dam). Some women have linked this with the start of lymphedema. Lymphedema has also been linked with air travel, possibly because of the low cabin pressure. Tips include:

• Wear loose jewelry, clothing, and gloves. Avoid anything that forms a snug band around your arm or wrist.

• 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. After mastectomy, use a lightweight prosthesis (breast form). A heavy prosthesis may put too much pressure on the area.

• Do not have your blood pressure taken on the affected arm. If both arms are affected, blood pressure can be taken on your thigh.

• On long or frequent flights, wear a compression sleeve. 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. 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.

Try to avoid muscle strain

It's important to use your affected arm for normal everyday activities to help you to heal properly and regain strength. This includes doing things like brushing your hair and bathing. Using your muscles also helps drain lymph fluid from the limbs. If you’ve had surgery or radiation treatment, 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, which can result in injury, has been linked with the start of lymphedema in some women. It's a good idea to follow these tips:

• Use your affected arm as normally as you can. Once you are fully healed, 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 shoulder and arm. Before doing any strenuous exercise, such as lifting weights or playing tennis, talk with your doctor, nurse, or physical therapist. They can help you set goals and limits so that you can work at the level of activity that is right for you. Ask your doctor or physical therapist if you should be fitted for a sleeve to wear during strenuous activities.

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

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

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

Try to avoid gaining weight

Extra fat requires more blood vessels. This creates more fluid in the arms and chest, and places a greater burden on the lymph vessels that are left. At least 2 studies have found that gaining weight after mastectomy is linked to a higher risk of lymphedema. Women who are more overweight (obese) were more likely to have severe lymphedema.

How to care for cuts, scratches, or burns

• Wash the area with soap and water.
• Put an antibiotic cream or ointment on the area.
• Cover with a clean, dry gauze or bandage.
• 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: pus, rash, red blotches, swelling, increased heat, tenderness, chills, or fever.
• Call your doctor right away if you think you may have an infection.

Signs of lymphedema

The signs of lymphedema may include:

• swelling in the breast, chest, shoulder, arm, or hand
• area feels full or heavy
• skin changes texture, feels tight or hard, or looks red
• new aching or discomfort in the area
• less movement or flexibility in nearby joints, such as your shoulder, hand, or wrist
• trouble fitting your arm into jacket or shirt sleeves
• bra doesn't fit the same
• ring, watch, and/or bracelet feels tight but you have not gained weight

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

If you have had any type of breast surgery, lymph nodes removed, or radiation treatment, look at your upper 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.

When to call your doctor or nurse

• if you notice any swelling, with or without pain, that lasts for 1 to 2 weeks

• if any part of your affected arm, chest, breast, or underarm area (axilla) feels hot, looks red, 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 related 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. The treatment is prescribed by your doctor and should be given by an experienced therapist. Be sure to check your health insurance to make sure the treatment is covered.

Mild lymphedema should be treated by a physical therapist or other health care professional who has gone through special training. Moderate or severe lymphedema is most often treated by a therapist with special training and expertise who will help you with skin care, massage, special bandaging, exercises, and fitting for a compression sleeve. This is sometimes known as complex decongestive therapy, or CDT. 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 the "Additional resources" section 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 for cost and ordering information.

National organizations and Web sites*

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

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

Susan G. Komen for the Cure
Toll-free number: 1-877-465-6636
Web site: www.komen.org

Breast Cancer Network of Strength
Toll-free number: 1-800-221-2141 (English);1-800-986-9505 (Spanish)
Web site: www.networkofstrength.org

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

Key points

The following is a self-quiz to help you remember some of the important areas covered here. Try taking the quiz, then look at the answers below. If you have any questions or something is not clear, talk to your doctor or nurse.

1. To help prevent and control long-term swelling, remember hand and arm precautions:

a. for 6 weeks after surgery
b. for 6 months after surgery
c. until your doctor says you have developed new lymph pathways
d. until you feel fine
e. forever

2. To prevent infection in the affected arm:

a. cut your cuticles every week
b. wear gloves when working with hot or sharp objects
c. use an electric shaver
d. stay out of bright sunlight
e. b and c only

3. If swelling appears in the affected arm or hand soon after surgery:

a. raise the arm for 45 minutes
b. call your doctor or nurse right away
c. raise and support your hand or arm above the level of your heart, then open and close your hand 15 to 25 times
d. a and c only
e. a, b, and c

4. Call your doctor or nurse:

a. if the affected breast, hand, arm, or underarm (axilla) feels hot or is red or swollen
b. if you have a temperature over 100.5° F
c. if you want to shave your underarm with an electric shaver
d. a and b only
e. a, b, and c

Answers

1. e -- Forever. Remember these precautions to help protect your arm and reduce your risk of ever getting lymphedema.
   
2. e -- Wear gloves when working with hot or sharp objects. Use an electric shaver to prevent skin injury. Use a sunblock (SPF of 15 or higher) to prevent sunburn. Do not cut your cuticles; use lotion and a cuticle stick instead.
   
3. d -- a and c only. Raise and support your arm for 45 minutes and open and close your hand 15 to 25 times. Repeat this 2 to 3 times.
   
4. d -- a and b only. Call your doctor or nurse if you have symptoms that might mean an infection, such as if the affected arm or underarm feels hot or is red or swollen, or if you have a fever that is not related to a cold or flu.

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