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Lymphedema: What Every Woman With Breast Cancer Should Know
Women who have been treated for breast cancer may be at risk for lymphedema, or arm swelling. Most women who have had breast cancer will not develop this side effect, but many will. This document describes what lymphedema is, the steps you can take to lower your risk, and what signs to look for. It is not possible to predict who will get lymphedema, but recognizing it early and starting treatment promptly can help manage it.

What Is Lymphedema?

Our bodies have a network of lymph nodes and lymph vessels that carry lymph fluid, similar to the way blood vessels circulate blood to all parts of the body. The lymph fluid contains white blood cells which help us fight infections. During surgery for breast cancer, the doctor usually removes at least one of the lymph nodes 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 intertwined with the nodes.

Removing lymph nodes and vessels from the underarm changes the way the lymph fluid flows within that side of the upper body. This makes it more difficult for fluid in the arm to circulate to other parts of the body. If the remaining lymph vessels cannot remove enough of the fluid in the breast and underarm area, 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 your risk for lymphedema.

Lymphedema usually develops slowly over time. The swelling can range from mild to severe, and it can develop soon after surgery or radiation treatment. It can also develop 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 developing lymphedema. Doctors still do not fully understand why some patients are more likely to have problems with fluid build-up than others. As breast surgery and treatment continue to become more conservative (that is, as more women are treated with lumpectomy) and as research advances are made with procedures such as the sentinel lymph node biopsy (a newer procedure which allows the surgeon to remove only 1 or 2 lymph nodes), doctors expect that fewer women will develop lymphedema. Although much remains to be learned about this condition, 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 the condition from getting worse.

How To Reduce Swelling After Surgery or Radiation

Immediately after surgery, the affected arm or breast area may swell. This swelling is usually temporary and gradually disappears over the next 6 to 12 weeks. The following suggestions may help relieve the swelling:

  • Use your affected arm as you normally do when combing your hair, bathing, dressing, and eating.
  • Elevate your affected arm above the level of your heart for 45 minutes, two or three times a day, while lying down. Position your arm on pillows so that your hand is higher than your wrist and your elbow is slightly higher than your shoulder.
  • Exercise your affected arm while it is elevated above the level of the heart by opening and closing your hand 15 to 25 times. Repeat this 3 to four 4 a day. This exercise helps to reduce swelling by pumping lymph fluid out of the arm through the undamaged lymph vessels.
  • To regain your normal range of shoulder and arm movement, begin exercising your affected arm about a week after your surgery as directed by your doctor, nurse, or physical therapist. Generally, normal range of motion returns within 4 to 6 weeks.
  • If you have radiation therapy after surgery, it may cause or prolong the swelling in the arm or cause some swelling in the breast toward the end of the treatment. This swelling is temporary and will gradually disappear. During treatment and up to 18 months afterward, you should do simple stretching exercises daily to maintain your shoulder range of motion.

How to Help Prevent and Control Lymphedema

Although there are no scientific studies to show that women can prevent lymphedema, most experts recommend following these basic guidelines, which 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 more difficult 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 suggestions 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 applying 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, abrasions, insect bites, hangnails or torn cuticles. Use an over- the-counter antibacterial cream on any openings once they are cleaned, and then cover with a bandage.
  • Wear protective gloves when doing household chores involving chemical cleansers or steel wool, gardening or yard work, and perhaps while washing dishes.
  • Wear a thimble when sewing to avoid needle and pin pricks to your finger.
  • Use an electric shaver for removing underarm hair; it may be less likely to cut or break the skin than a straight razor or hair removal cream.
  • If necessary, use an insect repellent when outdoors to avoid bug bites. If you get stung by a bee in the affected arm, clean and elevate the arm, apply ice, and contact your doctor or nurse if it becomes infected.

Try to Avoid Burns

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

  • Protect your arm from sunburn. Use sunscreen that is labeled "SPF15" 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 excessive heat, such as from hot tubs and saunas, since heat can increase fluid build-up.

Try to Avoid Constriction

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 associated this with the onset of lymphedema. Lymphedema has also been associated with air travel, possibly because of the low cabin pressure. Suggested precautions include:

  • Wear jewelry, clothing, and gloves that are not too tight.
  • Avoid shoulder straps when carrying briefcases and purses.
  • Wear a loose-fitting bra so that the straps do not dig into your shoulder. Following mastectomy, use a light weight prosthesis.
  • Have your blood pressure routinely 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 whether you should be fitted for a sleeve to wear during air travel. You may also want to discuss ways to safely keep your arm above the level of your heart during long flights.

Try to Avoid Muscle Strain

It's important to use your affected arm for normal everyday activities, such as brushing your hair and bathing, for you to heal properly and regain strength. But overuse, which can result in injury, has been associated with the onset of lymphedema in some women. It's a good idea to follow these suggestions whenever possible:

  • Use your affected arm as normally as possible. Once you are fully healed, about 4 to 6 weeks after surgery or radiation treatment, you can continue to do the activities you did before your surgery.
  • Exercise regularly but try not to over-tire your arm. Before doing any strenuous exercise, such as weightlifting or tennis, talk with your doctor, nurse, or physical therapist about your specific goals and limitations so that you can decide what level of activity 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 as much as possible to carry heavy packages such as groceries or handbags, or children.
  • In general, you should be able to return to all of your pre-breast cancer activities -- with care, of course.

Try to Avoid Gaining Weight

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

How to 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 develop an infection.

Signs of Lymphedema

The signs of lymphedema may include:

  • arm feels full or heavy
  • skin feels tight
  • less movement or flexibility in the hand or wrist
  • difficulty fitting the arm into jacket or shirt sleeves
  • 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 examine 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 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 or underarm area (axilla) feels hot, is red, or has sudden swelling. These symptoms could signal an infection and may require antibiotics.

  • If you develop a temperature over 100.50F that is not related to a cold or flu.

Lymphedema Treatment

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 specialized 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 in combination with skin care, compression therapy and exercise to manage lymphedema. Seeking and 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 lists therapists, nurses and physicians who specialize in treating lymphedema.
Internet Address: www.clt-lana.org

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

The Susan G. Komen Breast Cancer Foundation
Telephone: 1-800-I'M AWARE (1-800-462-9273)
Internet Address: www.komen.com

Y-ME National Breast Cancer Organization
24-Hour National Breast Cancer Hotlines 1-800-221-2141 (English); 1-800-986-9505 (Spanish)
Internet Address: www.y-me.org

Key Points

The following is a self-quiz to help you remember some of the important areas covered in this document 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 chronic swelling, you should remember hand and arm precautions: a. for six weeks after discharge.
    b. for six months after discharge.
    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. elevate the arm 45 minutes.
    b. call your doctor or nurse immediately.
    c. elevate your hand or arm above the level of the heart, then open and close your 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 axilla (underarm) feels hot or is red or swollen. b. if you develop a temperature over 100.50 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 -- Always. Remember these precautions to help protect your arm and reduce the risk of lymphedema occurring.
  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. Elevate 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 develop a fever that is not related to a cold or flu.

Revised: 09/04/2007

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