What is lymphoedema?

Lymphoedema is the swelling that occurs when the lymph nodes or vessels that make up the lymphatic system become blocked or damaged. This damage or blockage causes a build-up of fluid in the body's soft tissues.

The lymphatic system is part of the body’s immune system. It helps to fight infection and protect the body from disease. It is made up of a network of vessels throughout the body that carry fluid call lymph. The lymph fluid passes through lymph nodes, which filter out and destroy any harmful substances such as bacteria, viruses or cancer cells.

Lymphoedema occurs when the system does not work properly because of a mechanical problem. The fluid cannot drain, so it causes swelling in the tissues.

Lymphoedema most commonly occurs in the arms or legs, but it can also be seen in the chest, genital area, head or neck.

What are the symptoms of lymphoedema?

The main signs and symptoms of lymphoedema are:

• swelling, which might come and go, in the arm, leg or other affected body part. The first sign might be that clothes, shoes or jewellery seem tighter than usual
• a feeling of heaviness or tightness in the affected limb or area of the body
• aching and discomfort in the affected limb or area of the body
• less movement in the affected arm or leg
• repeated skin infections
• a toughening or thickening of the skin
• pitting of the skin (so gently pushing on the skin leaves an indent)

Lymphoedema can come and go. Many people find that the lymphoedema swelling gets worse:

• through the day and then gets better overnight
• in the heat
• with overuse of the limb
• by not changing positions
• with prolonged inactivity

Lymphoedema may be mild (where no swelling is noticeable); moderate (where pitting of the skin is seen); or severe (where the skin becomes hard and fattier).

If you notice any of these symptoms, you should make an appointment to see your doctor.

What causes lymphoedema?

There are 2 main types of lymphoedema — primary and secondary lymphoedema — and each type has a different cause.

Primary lymphoedema is rare, while secondary lymphoedema is more common. Lymphoedema can also be a mix of the primary and secondary types.

Primary lymphoedema

Primary lymphoedema is caused by a faulty gene and people affected by this form of the condition are born with an abnormality of the lymphatic system. The lymphatic vessels in primary lymphoedema might be:

• reduced in number
• too large to work properly
• missing

While it can occur at any age, primary lymphoedema usually develops in early childhood, adolescence or early adulthood.

Secondary lymphoedema

Secondary lymphoedema is caused by damage to, or blockage of, the lymphatic system as a result of:

• surgery — often lymph nodes are removed as part of cancer surgery
• radiotherapy for cancer
• trauma or tissue damage
• immobility due to age, pain or infection
• obesity

Women who have surgery or radiotherapy for breast cancer can get secondary lymphoedema in their arm and chest. Men and women who have had surgery or radiotherapy for bowel cancer, prostate cancer or cancer of the reproductive system are also at risk of secondary lymphoedema in the legs or groin area.

Lymphoedema may occur immediately after the lymphatic system has been damaged or blocked or it may develop years after.

How is lymphoedema diagnosed?

If your doctor suspects you might have lymphoedema, they will ask you about your signs, symptoms and medical history.

They will also examine any parts of your body that are affected and measure them to see if there is any swelling. You might also need more tests to assess the extent of the lymphoedema.

If a diagnosis of lymphoedema is made, your doctor will refer you to a specialist lymphoedema centre to manage the condition.

How is lymphoedema treated?

While lymphoedema cannot be cured, it may be possible to keep it under control using complex lymphoedema therapy (CLT), also known as complex decongestive therapy (CDT). This treatment consists of:

• compression therapy — wearing tailored, graduated compression garments
• exercise — ensuring you move about regularly and do any special exercises you have been advised to, such as walking or resistance training
• manual lymphatic drainage — having specialised massage treatment, such as lymphatic drainage massage
• skin care — keeping the skin in good condition and reducing the chance of infection

Surgery may be an option if the lymphoedema cannot be managed with CLT. This should be discussed with your lymphoedema specialist.

The sooner treatment for lymphoedema is started, the more successful it is likely to be at keeping the condition under control.

Can lymphoedema be prevented?

If you have had surgery, radiotherapy or an injury that puts you at risk of developing lymphoedema, there are a few things you can do to reduce the risk. You should:

• take good care of your skin
• keep your skin clean by washing with pH-neutral soap — avoid scented soaps and washes
• use a moisturiser like sorbolene every day to keep your skin soft and moist
• avoid sunburn by applying sunscreen and wearing protective clothing
• use insect repellent to protect against bites
• avoid cuts and infections
• wear gloves while gardening, washing up and doing housework
• use antiseptic on any cuts
• see your doctor urgently, if a cut looks as though it is infected
• cut your nails with clippers, not scissors
• if you shave, use an electric razor
• avoid putting pressure in the wrong place, such as because of a tight bra strap or around an affected arm
• avoid using an affected arm for injections, blood samples, drips or blood pressure measurement
• avoid tight-fitting clothes or jewellery
• keep active
• do exercises to reduce the risk of lymph fluid accumulating
• start any exercise slowly and build up gradually
• keep at a healthy weight
• if you are overweight, talk to your doctor about losing weight
• make sure you eat a healthy, balanced diet

Stimulating the flow of fluid through your lymphatic system will reduce the chances of a fluid build-up and may help you prevent lymphoedema.

Resources and support

The Australian Lymphology Association provides information about lymphoedema. The association can also put you in touch with a local support group.

For information about secondary lymphoedema, refer to:

• Understanding Lymphoedema: a guide for people affected by cancer (factsheet produced by the Cancer Council).
• Lymphoedema — What you need to know (factsheet produced by Cancer Australia)