What is lymphedema?

Lymphedema is excess fluid inside your body. It causes swelling in your arms, legs, fingers, and toes. The condition happens when your lymph nodes (small glands) are removed, such as during cancer treatment. This can be caused by abnormal development of your lymph system (primary lymphedema). It can also happen due to a disease or surgery (secondary lymphedema).

Symptoms of lymphedema

Symptoms include:

  • Swelling in your arms and legs.
  • A feeling of heaviness and tightening of the skin around the affected areas.
  • General discomfort.
  • Difficulty moving the affected arms or legs.
  • Itching or burning in your legs.
  • Difficulty sleeping.
  • Hair loss.

What causes lymphedema?

Cancer and cancer treatment can cause secondary lymphedema. It’s a common side effect of breast cancer surgery when doctors remove all or part of the breast(s) or lymph nodes under the arm. It can occur in the legs after surgery related to uterine, prostate, vulvar, or ovarian cancer, melanoma, or lymphoma. Removing lymph nodes from the groin, pelvis, or neck also can cause lymphedema. Lymphedema risk increases with the number of lymph nodes that are removed or damaged. Radiation treatments also can cause lymphedema.

Other factors can raise the risk of lymphedema, including being overweight or obese, delayed healing of skin after surgery, a tumor that blocks blood vessels or lymph nodes in the underarm, chest, neck, pelvis, or abdomen (stomach), and lymph scar tissue under the collarbone.

How is lymphedema diagnosed?

Your doctor will examine the swelling, ask you questions about your health history, and consider other causes, such as infection or blood clots. He or she may measure the swelling in your leg, for example, and compare it to the size of your other leg. Other methods to diagnose the condition include lymphoscintigraphy. This procedure uses a probe to scan the inside of your body. Before the procedure, you will be injected with a small amount of a radioactive dye that lights up the affected area. It will be visible with the probe.

Several imaging procedures, such as MRI (magnetic resonance imaging) and CT (computed tomography) scan, can provide your doctor with a look at the inside of your body. These procedures are similar to an X-ray. To determine the seriousness of lymphedema, doctors grade the affected area (1-4) based on the size and severity of the swelling.

Can lymphedema be prevented or avoided?

There’s no guarantee you can prevent or avoid lymphedema. However, you can reduce your risks or delay onset by taking certain precautions.

  • Avoid injury to the affected area. For example, if you had lymph nodes removed from your underarm, avoid lifting and carrying heavy items. Avoid the risk of infection through burns and cut. If you have to have a blood test, have it taken from the arm that is not affected. The same is true for blood pressure tests. Have your nurse put the blood pressure cuff on the opposite arm.
  • Wear loose clothing. It doesn’t have to be baggy clothing. However, avoid overly tight jeans, pants, sleeves, etc.
  • Rest and recover. After cancer treatment, give your affected arm or leg a rest for as long as your doctor recommends. Don’t engage in heavy exercise or physical activity until your doctor approves. Consider elevating your arm or leg. This reduces swelling.
  • Lose weight if you are overweight, or maintain a healthy weight.

Lymphedema treatment

There is no medicine to treat lymphedema. Lymphedema is treated by a physical therapist (PT). Your therapist will give you special exercises you can do at your PT appointment and at home to reduce swelling.

You also may receive a compression garment to wear on your affected arm or leg. This is different than wearing tight clothing. The garment (looks like a sleeve) applies the right amount of pressure on the swelling. Depending on the severity of your lymphedema, you may have to wear the compression garment all of the time or in certain circumstances. Many breast cancer survivors, for example, have to wear a compression sleeve during air travel. Air travel tends to increase swelling.

Living with lymphedema

Lymphedema does cause discomfort. Therefore, it’s important to plan ahead if you know you are having surgery that could cause lymphedema. Learn the preventive steps you can take to reduce your post-surgery risks or delay it. If you have developed lymphedema, your daily living will revolve around managing the discomfort. This may include daily exercises, watching your diet and weight, avoiding injury, and wearing a compression sleeve.

Questions to ask your doctor

  • Can lymphedema be cured?
  • If I was physically fit before my surgery, will that reduce my risk of lymphoma?
  • Does a high sodium diet make lymphedema worse?
  • Are there complications from uncontrolled lymphedema?


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