Living with Lymphedema
Sabrina S. Selim, BA, Francine Manuel, RTP, Cheryl Ewing, MD, Ernest H. Rosenbaum, MD

Psychosocial Issues
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Living with lymphedema is challenging on a variety of psychological levels. A pilot study of 10 women with post breast cancer lymphedema reported concern over the betrayal of their body, abandonment of medicine (unsympathetic doctors, limited knowledge or conflicting information provided), concealing an imperfect body image through inadequate clothing or elastic sleeves, and managing the interruption of a normal flow of life. (10) Several women stated that they had a harder time enduring/suffering through the reformulation of self following the advent of lymphedema than their diagnosis and treatment of breast cancer. (10) Other articles report increases in anxiety, depression, difficulty at work, home, in social situations and sexually. These complications are very understandable considering the physical and emotional impacts of pain, disfigurement, limited mobility and disruption to normal life caused by lymphedema.

On a positive note, the knowledge about lymphedema, and consequently the way that health providers approach this problem, is continually improving. Resources such as Y-me, the American Cancer Society, lymphedema specialists and local support groups can be instrumental in reducing the common frustrations and anger associated with coping with lymphedema. With proper support, breast cancer survivors with lymphedema can minimize physical problems while reducing its emotional impact. Interacting with others who successfully deal with lymphedema, improving education about preventions and treatments and sharing the emotional burden with others who understand can be extremely rewarding.

Nutrition
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During wound healing, as during all illnesses, it is important to provide the body with adequate nutrients and calories. It is suggested that a person needs 30-35 calories/kg/day, 1.25-2 grams protein/kg/day and vitamins. (12) These include a multi-vitamin, vitamin C for collagen (a component of skin) formation, vitamin A for increased cell development, and zinc for wound healing. (12) Zinc will also correct yellow nail syndrome associated with chronic lymphedema.

It should be noted that patients with lymphedema are encouraged to eat enough food and supplemental protein. While the thought may be that decreasing protein intake will decrease the high protein levels in lymph fluid, and thus decrease lymphedema, this is not true. Rather, too little protein may weaken connective tissue and worsen the lymphedema condition. Easily digestible protein, such as chicken, fish and tofu, is advised. (11)

A balanced healthy diet that includes whole grains, fruits and vegetables and fish not only promotes optimal weight, but makes you feel good. Furthermore, a healthy diet can maintain the body's immune system, which will help prevent and treat infections. It is advised to restrict fatty foods or those with high cholesterol, to increase low sodium/high fiber foods, to avoid excessive alcohol and to avoid smoking.

Exercise
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The rationale behind doing mild exercise is that muscle contractions, especially in the calf and arm, help to promote lymph flow to veins in the neck region where it returns to the blood circulation. Exercise also helps the proteins in lymph fluid to be reabsorbed. Both result in a lesser severity of lymphedema.

Although there is no consensus on the type of exercise regimen for people with lymphedema, all schools of thought agree that exercise is a necessary part of healing and that it should be tailored to each patient's needs and abilities. In general, it has been suggested that a monitored, progressive exercise program, in which a person slowly builds up their stamina and strength is far better than a strenuous one, no matter what the patient's previous athletic history. High speed activities such as golf, tennis, jogging or hiking at high altitudes are not suggested as they may actually increase lymphedema. Activities such as walking, swimming, light weights or cycling, in contrast are generally safe. For people with severe lymphedema who have a difficult time moving, even breathing enhances the pumping of lymph in the chest region. Deep breathing exercises such as mild yoga may be especially helpful to promote both relaxation and decrease lymph load.

Several rules about exercising with lymphedema should be observed:

  1. Always start an exercise program gradually to avoid sprains and injury to muscles. It will also allow the person to observe how the edematous extremity responds to exercise. This will differ for each person.
  2. A compression garment or bandages should always be worn during exercise. This provides pressure on the limb and assists in pumping lymph from the extremity.
  3. For women with post breast cancer treatment lymphedema in the arm, arm exercises should begin as soon as the doctor okays it. If the shoulder or wounds are sore, begin with mild pendulum exercises. Lean forward and let your arms hang down, then make circles. You can also swing them forward, backward and sideways. Once you can lift the arm over your head, you can begin active exercises.
  4. An exercise program should involve all of the following movements:
    a.Flexion (arms over the head close to the ear, palms toward the head)
    b.Extension (move straight arms toward your back)
    c.Abduction (arms away from the body, palms down)
    d.Horizontal abduction (move arms across the chest)
    e.External rotation (put hands behind your head)
    f.Internal rotation (put hands behind your back)
    Once you can do these movements 30 times without weights, add one pound per week. Take your time. Begin with 10 and add 5 repetitions each day. If weight lifting adds to increased lymphedema, just do the exercise without the weight.
  5. Daily exercise should be done as long as motion is limited. Once you have full movement, you can exercise 3x per week.

A Sample Progressive Exercise Program (12)

This exercise program has been devised to increase your strength and endurance. The program, which takes you from your bed to being up and around in three stages, can be started as soon as your physician says its ok. You can refer to the healthlibrary.stanford.edu/resources/videos.html website for videotapes of appropriate exercises.

Stage I is on one tape and Stages II and III are together on another tape. The demonstrations include warm-up and full-exercise programs with relaxation sessions at the end.

Stage I exercises are simple and help you to maintain and increase your range of motion. They require little exertion and can be done in bed.

Stage II exercises use a small added weight to increase resistance and can be done when you are spending part of the day out of bed. Once you have gotten back to your normal activities, you will need to establish an exercise routine that includes exercises like these to build up your body's reserves so that temporary bouts with bed rest will not deplete your energy stores.

Stage III exercises provide you with a strengthening and maintenance program for when you are able to spend the whole day out of bed. This series of exercises is a progressive and comprehensive physical rehabilitation program for people with acute or chronic illness. With your doctor's permission, you can begin these exercises even while you are recovering from surgery or undergoing cancer therapy.

Travel
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Air travel may be especially challenging for women with lymphedema. The decreased cabin pressure generally causes swelling in normal tissues; damaged elastic fibers in the lymphedemic skin make it especially susceptible to severe increases in lymph volume. It is therefore recommended to wear a compression garment while in the air, to increase non-caffeinated fluid intake and to do mild exercises that promote the movement of lymph back into the venous system. Some tips for travel, compiled from a paper (13) from the National Lymphedema Network include:

The same article (13) suggested several necessary toiletries to take with you:

Tips for Women affected with Lymphedema (Summarized in part from NLA's 18 Steps)(11)
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  1. Be aware of the warning signs of lymphedema: swelling of the extremity, redness, pain or change in sensation in the arm, neck or chest wall
  2. Have procedures (blood pressure checks, IV injections or pin pricks) done on the arm not affected by breast cancer therapy (mastectomy, lymph node dissection, radiation therapy
  3. Follow the rule take better care of your hands than you do your face. Keep your arm, forearm and hands clean. Use lotions to avoid dryness
  4. When shaving your armpits, use an electric razor rather than a blade. This will help minimize nicks or cuts that may lead to infection
  5. Keep your diet low in fat and high in fiber to avoid weight gain. Remember, weight gain following treatment is one of the biggest reasons that women develop late-onset lymphedema
  6. Stop smoking and limit alcohol to one drink per day
  7. Seek medical attention should you notice signs of infection: redness, increased skin temperature or pain
  8. Avoid insect bites by using DEET-free insect repellents
  9. Protect arm/hand from wounds during housework/gardening. Wear gloves if necessary
  10. Traveling: Vaccinations for travel should be done on the healthy arm
  11. Avoid carrying heavy baggage with affected arm
  12. While in flight; do exercises with feet, calves, thighs and arms; walk up and down aisles frequently, drink extra fluids; wear comfortable shoes and don't remove them during flight

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Supportive Cancer Care
by Ernest H. Rosenbaum, MD & Isadora R. Rosenbaum, MA
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