Why do I need to know about lymphedema?

Women who have been treated for breast cancer may be at risk for arm swelling called lymphedema (limf-uh-dee-muh). Most women who have had breast cancer will not develop this side effect but many will. 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 recognizing it early and starting treatment right away can help manage it.

What is lymphedema?

Our bodies have a network of lymph (limf) nodes and lymph vessels that carry lymph fluid, much like blood vessels carry blood to all parts of the body. (See the picture on the next page.) The lymph fluid contains white blood cells which help us fight infections. During surgery for breast cancer, the doctor usually removes at least 1 lymph node from the underarm area to see if the cancer has spread. Some 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 from the underarm changes the way the lymph fluid flows in that side of the upper body. This makes it harder for fluid in the arm to get to other parts of the body. If the remaining lymph vessels cannot drain enough of the fluid from the breast and underarm 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, increasing the risk of lymphedema.

Lymphedema usually develops slowly over time. The swelling can range from mild to severe. It can start soon after surgery or radiation treatment. It can also begin months or even years later. Women who have many lymph nodes removed and women who have had radiation therapy to the 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, as 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 that they can be preserved when possible, a procedure called axillary reverse mapping.

There is still much to be learned about this condition, 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 keep it from getting worse.

The network of lymph nodes and vessels

How can I 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 like you normally would to do things like comb your hair, bathe, dress, and eat.

• Two or 3 times a day raise your affected arm above the level of your heart and keep it there for 45 minutes. Lay 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 to 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 or prolong arm swelling. It may also cause some swelling in the breast toward the end of the treatment. 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 shoulder.

How can I help prevent and control lymphedema?

At this time there are no scientific studies to show that women can prevent lymphedema. Still, most experts recommend following the basic guidelines listed here. They may help you lower your risk of developing lymphedema or delay its onset.

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 transport 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 injections given in your unaffected arm. Also have flu shots and vaccinations in your unaffected arm or somewhere else, like the hip. Let your doctor or nurse know that you are at risk for lymphedema.

• Keep your hands and cuticles soft and moist by regularly using moisturizing lotion or cream. Push 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, clean it with soap and water. Then use an over-the-counter antibiotic cream or ointment and cover with a bandage.

• Wear protective gloves when using chemical cleansers or steel wool, when doing any gardening or 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 straight 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 it shows any signs of getting infected.

Avoid burns

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

• Protect your arm 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.

• Use oven mitts.

• 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. Heat can increase fluid build-up.

• Avoid pressure, constriction, and other things that cause swelling

Constriction or squeezing of the arm may increase the pressure in nearby blood vessels, which may lead to increased fluid and swelling. 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 jewelry, clothing, and gloves that are not too tight. Avoid anything that forms a snug band around your arm or wrist.

• Avoid shoulder straps when carrying briefcases and purses.

• Wear a loose-fitting bra with padded straps so that the straps do not dig into your shoulder. After mastectomy, use a lightweight prosthesis.

• Have your blood pressure taken on the unaffected arm or, if both arms are affected, on your thigh.

• Wear a compression sleeve when traveling by air if you fly frequently or for long flights. A well-fitted compression sleeve may help prevent swelling. Talk to your doctor or physical therapist about exercises you should do while on a plane and whether you should be fitted for a sleeve to wear during air travel.

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. But 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 whenever you can:

• Use your affected arm as normally as possible. About 4 to 6 weeks after surgery or radiation treatment, you should be fully healed. Then you can begin to go back to all of the activities you did before your surgery.

• Exercise regularly but try not to over-tire your 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.

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

• Over time you should be able to return to all of your pre-breast cancer activities -- with care, of course.

Avoid weight gain

Extra fat in the arm requires more blood vessels. This creates more fluid in the arm 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.

Care for cuts, scratches, or burns

• Wash the area with soap and water.
• Apply an antibiotic cream or ointment to 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 apply a clean, dry dressing.
• Watch for early signs of infection: rash, red blotches, swelling, increased heat, tenderness, fever.
• Call your doctor right away if you think you may have an infection.

What are the signs of lymphedema?

The signs of lymphedema may include:

• Your arm feels full or heavy.
• Your skin feels tight.
• You have less movement or flexibility in your hand or wrist.
• You have trouble fitting your arm into jacket or shirt sleeves.
• Your ring, watch, and/or bracelet feels tight but you have not gained weight.

If you have had lymph nodes removed or radiation treatment, you may want to look at your upper body in front of a mirror. If you notice any of the signs listed above, and if they last for 1 to 2 weeks, call your doctor or nurse.

When should I call my 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 or underarm area (axilla) feels hot, is red, or has sudden swelling. These symptoms could signal an infection and you may need antibiotics

• if you have a temperature over 100.5°F (taken by mouth) that is not related to a cold or flu

How is lymphedema treated?

If you are diagnosed with lymphedema, there is effective treatment to reduce the swelling, keep it from getting worse, and limit the risk of infection. The treatment is prescribed by your doctor and should be given by an experienced professional. 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 professional with special training and expertise who will help you with skin care, massage, special bandaging, exercises, and fitting for a compression sleeve. (This combination of treatments is sometimes known as complex decongestive therapy, or CDT.) Manual lymphatic drainage, or MLD, is a type of massage used in along with skin care, compression therapy, and exercise to manage lymphedema.

Getting treatment early should lead to a shorter course of treatment to get your lymphedema under control.

Additional resources

National organizations and Web sites*

In addition to the American Cancer Society, other sources of patient information and support include:

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

National Lymphedema Network
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 (formerly Y-Me National Breast Cancer Organization)
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, you should remember hand and arm precautions:
   
   a. for six weeks after surgery.
   b. for six months after surgery.
   c. until your doctor says you have developed new lymph pathways.
   d. until you feel fine.
   e. always.
   
   
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 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 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.
   

1. e -- Always. Remember these precautions to help protect your arm and reduce the 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 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 symptoms that might mean an infection, such as if the affected arm or axilla 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: 07/21/2008
Last Revised: 07/21/2008