What is the lymph system?

The lymph system is made up of lymph nodes and vessels (tiny tubes that carry blood throughout your body). These lymph nodes and vessels run throughout your body to drain extra fluid and return it to the blood near your heart. Lymph nodes filter (clear out) viruses, dying cells, foreign matter, and bacteria to fight infection and keep us safe. The lymph system also recycles proteins throughout your body.

What is lymphedema?

Lymphedema is swelling that is caused by a buildup of fluid that happens over a long period of time (chronic swelling). When lymph fluid is not moving well through the lymph system, it builds up in the tissues and causes swelling.

What causes lymphedema in head and neck cancer patients?

If you have head and neck cancer, lymphedema can happen in any part of the head, neck, or face. There are many lymph nodes in these areas. Lymphedema can happen after cancer treatment because parts of the lymph system have been removed or harmed by surgery or radiation. Scar tissue from these treatments can also change how the lymph system works.

Lymphedema happens 2 to 6 months after treatment. Lymphedema can happen internally (inside the body) or externally (closer to the outer parts of the body):

Internal lymphedema can happen anywhere inside the body, like the oral cavity (mouth area), tongue, larynx (voicebox), airway, and throat.
External lymphedema happens in the neck and face and can include lips, nose, eyelids, and ears.

You can have internal lymphedema, external lymphedema, or both.

How is it diagnosed?

The more lymph nodes removed or harmed during treatment, the higher the chance of having lymphedema. It is normal to have swelling during and shortly after treatment that gets better on its own, but this is not lymphedema. Your provider will know the difference between normal swelling and lymphedema. The normal swelling from surgery often goes away, but if it lasts more than 6 weeks, you may need treatment for it.

The most common first symptoms of lymphedema are swelling, skin tightness, and achiness. A provider will check for these symptoms and look for any signs of lymphedema. If swelling is found, the provider may measure the swelling or rate it using a special scale for lymphedema.

What are the other symptoms?

Symptoms of head and neck lymphedema vary, depending on where and how bad the edema is. Symptoms can be:

Swelling in any part of the head and neck that may feel hard to the touch.
A feeling of tight skin or muscles.
Less range of motion in the neck and shoulders (feeling like you can’t move these areas as easily as you could before).
Change in sight or hearing.
A change in breathing, swallowing, eating, or speaking.
Feeling congested (stuffy).
Pain in the ear.

What is the treatment for head and neck lymphedema?

The earlier lymphedema is treated, the better the outcome. You may be referred to a therapist who specializes in lymphedema to learn how to lower your risk of getting lymphedema, like:

How to prevent injury and infection to your head and neck.
Getting regular exercise and keeping a healthy weight.
Using proper body movement and sleeping positions.
Protecting your skin and keeping it moisturized.
Avoiding tight clothing, scarves, and jewelry around the neck.

If you have been diagnosed with lymphedema, your treatment will most likely use complete decongestive therapy (CDT). CDT uses:

Manual lymphatic drainage: A therapist will use gentle, circular massage strokes to help the lymphatic fluid move more freely.
Compression: Compression bands or garments are worn around your chin, face, and head to give gentle support to the soft tissues. The compression lessens swelling and helps the body reabsorb (take in) the extra fluid.
Exercise: Exercise can help the muscles in the head and neck area get stronger and can help increase range of motion.
Self-Care: You will learn how to lower your risk and keep up with the treatments above.

It is important to find a therapist who has specialized training in lymphedema. Therapy is often done in two phases.

The first phase (called the intensive phase) is over a period of 2-4 weeks. The intensive phase works on reducing the swelling and teaching you how to manage it yourself. These first treatments are done in an outpatient therapy center. The therapist will spend time teaching you and your caregiver how to do these treatments at home.
Phase two (the homecare phase) is when treatments are done at home.