If you have radiation or surgery for your head and neck cancer, you will be at risk of developing lymphedema, or swelling, in your face, head, neck or nearby areas. Lymphedema is very common, with up to 75% of patients experiencing symptoms after treatment for their cancer.
What Causes Lymphedema?
The lymph system is made up of nodes and vessels that carry a clear fluid, called lymph, through the body. Lymph is composed of proteins, salts, water, and white blood cells, and its function is to fight infection. The lymph system works with lymph fluid in much the same way that your circulatory system works with blood, by transporting its vital fluid through a network of vessels to the heart. The lymph system also includes lymph nodes, which are small bundles of tissue located along the lymph vessels. Their function is to filter harmful substances from lymph fluid. When the system is damaged by radiation or surgery, lymph fluid cannot flow back to the heart the way that is should. It collects under the skin, causing swelling.
Head and neck cancer patients are particularly vulnerable to lymphedema due to the large number of lymph nodes and vessels in and around the head and neck. In head and neck cancer, lymphedema can be caused by:
- Surgery: When lymph nodes and vessels are removed during surgery for cancer, it becomes harder for the body to move lymph fluid out of the area.
- Radiation: Radiation can cause scarring and damage to the lymph nodes and vessels, affecting their ability to remove lymph fluid from the area.
- Cancer: Depending on its location, a tumor can block or disrupt the flow of lymph fluid out of the area.
Lymphedema typically occurs 2 to 6 months after treatment, but it can also occur years after treatment. Because it can be a long-term problem, it is best to get help for lymphedema as soon as possible.
Lymphedema in head and neck cancer patients can happen almost anywhere in the face, head or neck. Swelling can be internal, in locations like the mouth, tongue, voice box, or throat. Or, the swelling can be external, occurring in the neck and face. While the location and severity vary from person to person, some symptoms to watch for include:
- Swelling in any part of the face, head, or neck, especially swelling that feels hard to the touch
- Pain, stiffness, or decreased range of motion in the neck or shoulders
- A feeling of tight skin or muscles in the face, head, or neck
- New aching, tingling, numbness, or other discomfort in the face, head, or neck
- Changes in vision or hearing
- Difficulty breathing, swallowing, eating, or speaking
- Feeling congested
- Pain in the ears
Call your doctor right away if:
- Any part of the affected area feels hot, looks red, or swells suddenly. This could indicate a blood clot that requires immediate treatment.
- have a temperature of 100.5°F or higher that isn’t related to an illness.
Although some swelling is normal following surgery or radiation, any swelling that lasts longer than 6 weeks following treatment should be looked at by your doctor. He or she will do a physical exam and measure the swelling or use a standardized lymphedema scale to evaluate it. Your doctor will check to be sure there are no other causes of your swelling, such as a blood clot or infection.
To make a definitive diagnosis of lymphedema, your doctor may order one of the following tests:
- Lymphoscintigraphy: This test checks the lymph system’s function. A small amount of radioactive substance will be injected into your body. This substance is absorbed into the lymph system, where a scanner can see its movement as it travels through your body.
- MRI: This imaging test uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the body, including the lymph system.
If you are diagnosed with lymphedema, your doctor may determine its severity using an objective scoring system like the MD Anderson Cancer Center Head and Neck Lymphedema Scale, which uses 5 stages to describe lymphedema:
- Stage 0: No swelling, but a sense of heaviness in the neck
- 1a: Visible mild swelling without pitting. Reversible
- 1b: Visible mild swelling with pitting. Reversible
- 2: Firm pitting swelling that is irreversible. No visible tissue changes
- 3: Irreversible tissue changes with scarring and fibrosis
Your doctor may monitor the progression of your lymphedema with standardized face and neck measurements for external swelling, and/or endoscopy to evaluate internal swelling.
Prevention & Management
There are a number of steps you can take to reduce your risk of lymphedema or prevent it from getting worse. Your doctor may refer you to a physical therapist who can help. Management techniques include:
- Preventing of injury and infection to the head and neck
- Doing regular exercise and maintaining a healthy weight
- Using proper body mechanics and sleeping positions
- Protecting your skin and keeping it moisturized
- Avoiding tight clothing, scarves, and jewelry around the neck
If lymphedema does develop, it’s important to get treatment right away. The earlier treatment is started, the more successful it will be. Treatment for lymphedema most likely will consist of complete decongestive therapy (CDT). CDT includes:
- Manual lymphatic drainage: This treatment uses a series of gentle, circular massage strokes to promote the flow of lymph fluids out of the area.
- Compression: Compression bands or garments can be worn around the chin, face, and head to support the soft tissue and encourage fluids to be reabsorbed by the body.
- Exercise: Exercises to strength muscles and increase range of motion in the neck and shoulders will help keep swelling down and reduce pain and stiffness.
- Self-care: This includes techniques to reduce your risk of worsening lymphedema and continuing your CDT activities at home.
This informational card, perfect for physicians’ waiting rooms or exam rooms, lists strategies to detect symptoms, reduce risk and treating lymphedema.
This infographic is perfect to include on your website to visually share important facts, symptoms, risks and treatment options for lymphedema.
This downloadable resource can be printed or shared digitally and focuses on treating lymphedema.
This downloadable resource can be printed or shared digitally and focuses on exercises and stretching techniques for lymphedema.
This downloadable resource can be printed or shared digitally and focuses on posture, positioning and apparel to help reduce or manage lymphedema.
This downloadable resource can be printed or shared digitally and focuses on skin care to reduce or manage lymphedema.
This downloadable resource can be printed or shared digitally and focuses on diet and medications that may help manage lymphedema.
- “Lymphedema (PDQ®)–Patient Version.” National Cancer Institute, www.cancer.gov/about-cancer/treatment/side-effects/lymphedema/lymphedema-pdq.
- “Lymphedema.” American Head & Neck Society, 27 May 2019, www.ahns.info/survivorship_intro/topical_review-lymphedema/.
- Research. “Lymphedema After Head and Neck Cancer.” OncoLink, www.oncolink.org/cancers/head-and-neck/head-and-neck-cancer-survivorship/lymphedema-after-head-and-neck-cancer.
- “What Is Lymphedema?” American Cancer Society, www.cancer.org/treatment/treatments-and-side-effects/physical-side-effects/lymphedema/what-is-lymphedema.html.
- HPV-Attributed Head and Neck Cancer: A New Treatment on the Horizon
- Support Resources for Head and Neck Cancer Patients, Survivors and Caregivers
- The Story Behind the Smash Cancer Tennis Tournament: The Howard Family
- Re-Learning to Talk, Swallow, and Eat: A Caregiver’s Perspective
- Safety of Celebrating the Spring Holidays with Family and Friends for Head and Neck Cancer Patients