Lymphoedema

Understanding lymphoedema

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What is lymphoedema?

Lymphoedema (or lymphedema - U.S. spelling)  is a swelling of part of the body, usually a limb. Lymphoedema can occur as a side effect of cancer treatment when lymph nodes have been removed or damaged causing lymph fluid to build up in tissue under the skin.

Approximately 20% of patients treated for breast, melanoma, gynaecological or prostate cancers will develop lymphoedema.

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Lymphatic system

The lymphatic system is part of both the immune and circulatory systems which include:

Lymph fluid

Lymph fluid is a clear fluid that travels from the tissues in the body, carrying nutrients and immune cells and removing bacteria and cell debris, before being emptied into the bloodstream. This fluid is rich in proteins.

Lymph vessels

Lymph vessels are a large network of thin tubes found throughout the body. These carry lymph fluid around the body.

Lymph nodes (glands)

Lymph nodes are small structures found along the lymph vessels. Lymph nodes are located throughout the body, including the underarms, neck, abdomen, chest and groin. The lymph nodes filter the lymph fluid as it passes through the body, removing and destroying bacteria, viruses and other harmful substances.

Lymph tissue

This includes the lymph nodes, bone marrow, spleen, tonsils, thymus and some tissues in the digestive tract. The lymph tissue, lymph fluid and lymph nodes all contain white blood cells called lymphocytes, which help protect the body against infection and disease.

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Lymphoedema symptoms

Symptoms of lymphoedema can include:

• visible swelling
• an aching or tingling feeling
• being unable to fully move the affected limb
• tightness or heaviness in the limb
• pitting of the skin

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Causes of lymphoedema

Lymphoedema can affect people during and after cancer treatment depending on the location of the cancer, its stage, and the type of treatment. Some aspects that can increase risk aspects of developing lymphedema include:

• certain types of cancer that affect the lymphatic system
• radiation therapy (radiotherapy) that causes scarring of the lymph nodes and vessels
• surgery to remove lymph nodes
• being overweight
• an infection in a limb that is at risk of developing lymphoedema
• some chemotherapy drugs
• an existing problem with the lymphatic system
• reduced mobility.

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Diagnosis for lymphoedema

If you are experiencing symptoms, your doctor will examine the affected area and assess the level of swelling and any thickening or damage to the skin. Your doctor may refer you to a lymphoedema practitioner for a full assessment. Additional tests may include:

Volume measurement

Your limbs may be measured before cancer treatment to help determine any changes after treatment.

Photographic record

As some areas of the body may be difficult to measure, photographs may be taken, with consent, as a way of assessing changes in swelling.

Bioimpedance spectroscopy

This test uses mild electrical signals to compare how much fluid is in one limb compared to the other.

Doppler ultrasound

This is used to rule out blood clots as the cause of any swelling.

Imaging tests 

Magnetic resonance imaging (MRI), computerised tomography (CT) or an ultrasound can be used to show extra fluid or fat in tissues or tissue changes. 

Imaging procedures 

Lymphoscintigraphy or indocyanine green (ICG) fluorescent lymphography can be used to see if there are problems with lymph fluid flow. 

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Treatment for lymphoedema

There is no known cure for lymphoedema, but it can be managed. Lymphoedema may develop months or years after treatment. Symptoms are easier to manage if lymphoedema is diagnosed early.

A lymphoedema practitioner will work with you to develop a treatment plan based on the severity of swelling (the stage) and any other health conditions you may have. Treatment aims to improve the flow of lymph fluid through the affected area to reduce swelling. 

Mild lymphoedema (stages 0–1) is usually managed with skin care, exercise and compression therapy. Massage therapy may also be used for stage 1 lymphoedema. Moderate or severe lymphoedema (stages 2–3) usually needs complex lymphoedema therapy (CLT). Less commonly, you may have laser treatment, lymph taping and surgery. 

It is important to find a treatment that suits your lifestyle as lymphoedema needs lifelong management. 

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Preventing lymphoedema  

Reducing risk 

There are several things you can do to help reduce the risk of developing lymphoedema:  

• exercise regularly 
• maintain a healthy body weight 
• move normally but avoid pressure and strain 
• look after your skin. 

These suggestions are also useful for people living with lymphoedema. 

Travel – by plane, train, bus or car – has not been shown to increase the risk of lymphoedema. Even so, you may choose to take simple precautions while travelling like wearing loose-fitting clothing, moving regularly and drinking plenty of water. People with lymphoedema, or who have had lymph nodes removed as part of cancer treatment, may be advised to wear a compression garment during long-distance travel. 

Early intervention 

Finding lymphoedema before you notice any signs can reduce the risk of developing swelling. If you are at risk of lymphoedema, ask your treatment team if regular screening check-ups are recommended for you and available near where you live. Early detection and early intervention using education, compression garments and exercise help to reduce the impact of lymphoedema. 

Future prevention 

A lymphoedema practitioner may asses you before you have surgery and some hospitals have specialist physiotherapists who can teach you simple exercises to reduce the risk.

Risk reduction of lymphoedema focuses on surgical or radiotherapy techniques that are less damaging to the lymphatic system.

Sources

• Understanding Lymphoedema fact sheet, Cancer Council Australia, © 2023.
• Lymphoedema - what you need to know booklet, Cancer Australia, © 2013.