What is lymphedema?

Lymphedema is excess fluid inside your body. It causes swelling in your arms, legs, fingers, and toes. Lymphedema occurs when something blocks the flow of fluid away from your arm or leg, such as when lymph nodes (small glands) are removed. This happens during cancer surgery. Also, it can be caused by abnormal development of your lymph system (primary lymphedema). Or it can result from a disease or surgery (secondary lymphedema).

Symptoms of lymphedema

Lymphedema symptoms can include:

  • Swelling in your arms and legs
  • A feeling of heaviness and tightening of the skin around the affected area
  • 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 cause secondary lymphedema. It’s a common side effect of breast cancer surgery. That’s when doctors remove all or part of the breast(s) or lymph nodes under the arm. Also, it can occur in the legs after surgery for uterine, prostate, vulvar, or ovarian cancer, melanoma, or lymphoma. Removing lymph nodes from the groin, pelvis, or neck can cause lymphedema. The risk increases with the number of lymph nodes that are removed or damaged. Radiation treatments can cause lymphedema.

Other factors can raise the risk of lymphedema. This includes 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. These may include infection or blood clots. He or she may measure the swelling. Diagnosis might include a lymphoscintigraphy. This procedure uses a probe to scan the inside of your body. Before the procedure, you are injected with a small amount of a radioactive dye. The dye lights up the affected area. It is visible with the probe.

Your doctor may order imaging scans, such as MRI (magnetic resonance imaging) and CT (computed tomography) to show the inside of your body. These scans are similar to an X-ray. They can reveal possible sources of blockage to the flow of fluid. Doctors grade the affected area (1-4) to determine the seriousness of the lymphedema. Grading is based on the size and severity of the swelling.

Can lymphedema be prevented or avoided?

There’s no guarantee you can prevent or avoid it. You can reduce your risks or delay onset. Take these precautions:

  • Avoid injury to the affected area. If you had lymph nodes removed from your underarm, avoid lifting and carrying heavy items. Avoid infection through burns and cuts. If you have to have a blood test, have it done on the opposite arm. The same is true for blood pressure tests. Have the nurse put the blood pressure cuff on the opposite arm.
  • Wear loose clothing. It doesn’t have to be baggy. Avoid overly tight jeans, pants, sleeves, etc.
  • Rest and recover. After cancer treatment, give your affected arm or leg a rest. Follow your doctor’s advice. Don’t do heavy exercise or physical activity until your doctor approves. Elevate your arm or leg. This reduces swelling.
  • Lose weight if you are overweight. 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 with your PT and at home. These exercises reduce swelling.

You may have to wear a compression garment on your affected arm or leg. This is different than wearing tight clothing. The garment looks like a sleeve. It applies the right amount of pressure to the swelling. 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 lymphedema, your daily living will revolve around managing the discomfort. This includes exercise, weight loss, and avoiding injury. You may have to wear 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 lymphedema?
  • Does a high sodium diet make lymphedema worse?
  • Are there complications from uncontrolled lymphedema?