Understanding lymphedema

Lymphedema is a common side effect of cancer and cancer treatment. It may be emotionally discouraging and physically painful, but knowing the signs and symptoms of lymphedema may allow you to get help more quickly.

This condition affects the lymphatic system, a network that carries a specific fluid called lymph throughout the body. The lymphatic system is made up of the following key parts:

• Lymph. This colorless, watery fluid flows through the lymph vessels carrying T cells and white blood cells known as B lymphocytes.
• Lymph vessels. These vessels return lymph to the bloodstream by collecting it from other parts of the body.
• Lymph nodes. These bean-like structures in the neck, underarm, pelvis, groin and abdomen help fight infection by filtering lymph and storing white blood cells.

What is lymphedema?

When the lymph system is functioning effectively, lymph travels through the body. When it can’t flow through the body properly—because the lymph system is damaged or blocked, preventing lymph from circulating normally—lymphedema happens.

Lymphedema is the buildup of lymph fluid in the soft body tissues, often in the arms and legs. It visibly results in swelling.

Why lymphedema occurs

There are two different types of lymphedema. Primary lymphedema happens if the lymph system develops abnormally. Symptoms may present at birth, but not always.

Secondary lymphedema occurs when the lymph system is damaged. This may happen for reasons including:

• Cancerous tumor blocking the lymph system
• Reaction when lymph nodes or vessels are removed during surgery
• Radiation treatment

Symptoms

Recognizing the symptoms of lymphedema may help you get the help you need quickly. Symptoms include:

• Swelling, particularly in an arm or leg (including fingers and toes)
• Tight, thick and leather-like skin
• Tightness in the area, perhaps with a tingling sensation as if your arm or leg “fell asleep”
• Trouble sleeping
• Skin changes, such as blisters or warts
• Loss of hair

These changes may seem insignificant at first, but may worsen over time.

Diagnosis

If you’re experiencing lymphedema symptoms, call your doctor. There are a number of ways it may be confirmed:

• Physical exam. Your doctor checks your overall health and looks for signs of lumps. They compare the swollen arm or leg to the other one.
• Lymphoscintigraphy. Doctors use this method to check the lymph system for disease. It requires injecting a small amount of radioactive fluid into the body. This fluid flows through the lymph ducts, and a scanner or probe tracks its movement.
• Magnetic resonance imaging (MRI): This painless imaging test involves magnets, radio waves and a computer to create detailed photos of the body’s interior.

There are three stages of lymphedema:

• Stage 0: Swelling has not yet developed, but subtle symptoms, like a feeling of fullness or tightness in the affected area, may be noticeable.
• Stage 1. This is the least advanced stage and may resolve without treatment. Doctors diagnose stage 1 lymphedema when they press on the swollen area and notice a dent.
• Stage 2. Pressing on the affected area doesn’t leave a dent, and tissue fibrosis may cause the area to feel hard or spongy.
• Stage 3: This stage shows large areas of swelling.

Treatment

If a tumor is causing your lymphedema, cancer surgery may resolve the blockage. If the lymphedema is a result of surgery, there are various treatments and types of self-care that may help you feel more comfortable:

• Exercise. Though you may be in pain, moving around helps drain fluid and reduce swelling.
• Compression sleeves or socks. Your doctor may suggest wearing specific tight-fitting garments over the affected areas to reduce swelling by pushing lymph fluid.
• Manual lymph drainage. This is a very specific type of massage therapy done by a trained professional to get lymph fluid moving.
• Sit with legs uncrossed. Crossing legs may prevent fluids from moving. Also, switch your sitting position every 30 minutes.
• Avoid pressure and restriction: Avoid tight-fitting clothes, jewelry or carrying bags on your shoulders.

Complications

If lymphedema is left untreated, it causes a ripple effect. For example, cells that help fight off infection may have trouble getting to an affected area of your body, heightening the risk that it may become infected. Wounds may take longer to heal, and you may experience soreness and stiffness.

Mentally, it may be challenging, particularly if you’re also going through cancer treatment or if it’s the result of a cancerous tumor.

It’s important to remember that you’re not alone, and that physical and mental health treatments are available to you.

Prevention

There aren’t specific steps guaranteed to prevent lymphedema. However, because lymphedema may occur after cancer surgery, speak with your care team in advance for advice on how to lower your risk.

One helpful step is exercise—even gentle exercise helps keep lymph moving.