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Lymphoedema

What is lymphoedema?

Lymphoedema is swelling (oedema) that develops when lymph fluid builds up in the tissues under the skin or sometimes deeper in the abdomen and chest areas. This happens because the lymphatic system is not working properly in that part of the body. It usually occurs in an arm or leg, but can also affect other parts.

Lymphoedema can be either primary, when the lymphatic system has not developed properly, or secondary, following treatment for cancer. It can affect people at any time – during active cancer treatment, after treatment or in remission. It can also develop while you’re living with advanced cancer or during palliative treatment.

Lymphoedema can occur months or years after treatment and usually develops slowly. 

The lymphatic system

The lymphatic system is part of both the circulatory and immune systems. It consists of:

  • Lymph vessels – a large network of thin tubes found throughout the body that carry lymph fluid from our tissues, organs and structures to the lymph nodes.
  • Lymph fluid – this normally clear fluid travels to and from the tissues in the body, carrying nutrients and taking away bacteria, viruses, abnormal cells and cell debris.
  • Lymph nodes (glands) – small, bean-shaped structures found along the lymph vessels. Lymph nodes are located throughout the body, including in the neck, underarms, chest, abdomen and groin. The lymph nodes filter lymph fluid as it passes through the body, before emptying most of the fluid into the bloodstream.
  • Other lymph tissue – found in other parts of the body including the spleen, bone marrow, thymus, tonsils and digestive tract.

The lymph fluid, lymph nodes and lymph tissue contain white blood cells called lymphocytes, which help protect the body against disease and infection.

The lymphatic system, showing Tonsils, Lymph nodes, Lymph vessels, Bone marrow, Thymus, and Spleen

 

How common is lymphoedema?

Lymphoedema can occur following treatment for many different cancers. There is little statistical information about how common lymphoedema is following cancer treatment.

However, one Australian study estimated that lymphoedema occurs in over 20% of all cancer patients treated for gynaecological (vulvar/vaginal, ovarian, uterine and cervical), breast, prostate cancers or melanoma.

Signs and symptoms

Acting at an early stage can help reduce the risk of developing lymphoedema and its severity. You may have one or more of the following symptoms and/or signs in the affected area:

  • feeling of tightness, heaviness or fullness
  • aching in the affected area
  • swelling that comes and goes or is more noticeable at the end of the day
  • clothing, shoes or jewellery feeling tighter than usual
  • not being able to fully move the affected limb
  • pitting of the skin (when gentle pressure leaves an indent on the skin).

Leaving lymphoedema untreated 

If left untreated, lymphoedema can progress and cause a range of problems including:

  • trouble moving around and doing your usual activities
  • discomfort and sometimes pain
  • difficulty fitting into clothes or shoes
  • an increased risk of infections and of small infections becoming more serious
  • further hardening of the skin and other structures (fibrotic changes)
  • lymph fluid leaking from the skin (known as lymphorrhea)
  • very rarely, the development of lymphangiosarcoma, a soft tissue cancer.

 

Risk factors

Whether or not you develop lymphoedema after treatment for cancer depends on the location of the cancer, its stage and the type of treatment. While the risk is lifelong, most people who are at risk never develop lymphoedema. Some factors increase the risk:

  • surgery to remove lymph nodes – the more nodes removed, the greater the risk of developing lymphoedema
  • radiation therapy that causes scarring and thickening of the tissues and often the lymph nodes and lymph vessels
  • taxane-based chemotherapy drugs
  • an infection in the limb at risk of developing lymphoedema
  • injury of the lymphatic system – for example, a tumour growing near a lymph node or vessel can block the flow of lymph fluid
  • an existing problem with the lymphatic system
  • rheumatoid arthritis
  • being overweight or obese
  • not being able to move around easily.

Reducing your risk

There are several things you can do to help reduce your risk of developing lymphoedema after treatment. If you notice changes in the affected part of your body, see your doctor immediately.

Use the affected area normally

  • Don’t try to protect the affected limb by limiting its movement – moving the limb normally will keep the lymph fluid flowing.
  • Avoid repeated heavy lifting, such as moving heavy boxes or furniture, as it may worsen your symptoms.
  • Avoid pressure in the wrong place, such as a tight bra strap or underwear with tight elastic.
  • Research shows that it is not necessary to wear a compression sleeve during airplane travel if you don’t have lymphoedema. 

Look after your skin

  • Keep your skin clean. Wash with a pH-neutral soap and avoid scented products.
  • Moisturise your skin every day. Dry and irritated skin is more likely to tear and break.
  • Protect your skin – wear gloves for gardening, housework, handling pets. Use insect repellent to prevent insect bites. Avoid cutting or burning your skin when cooking. Wear protective clothing, a broad-brimmed hat, sunglasses and sunscreen when in the sun.
  • Seek medical help urgently if you think you may have a skin infection.

Exercise regularly

  • Keep physically active to help the lymph fluid flow.
  • Do regular exercise such as swimming, yoga, bike riding, aquarobics, walking or running. Gardening and housework also count as exercise.
  • It’s okay to do resistance training – increase the weight and intensity gradually. Be guided by how your limb responds, and cool down slowly.
  • Start any exercise slowly and build-up gradually.
  • Visit an accredited exercise physiologist or physiotherapist to develop an exercise program.

Maintain a healthy body weight

  • Aim to stay in a healthy weight range. Being overweight can be a risk factor for developing lymphoedema.
  • Eat a variety of nutritious food each day – aim for at least 5 serves of vegetables and 2 serves of fruit, and choose a variety of wholegrain, wholemeal and high-fibre foods, such as bread, pasta, oats, rice, legumes (beans, peas and lentils) and nuts.

 

Recognising and managing infections 

If lymph fluid can’t drain properly, bacteria can multiply and an infection may start in the affected area or sometimes more generally in the body. People with lymphoedema are at higher risk of getting a serious infection known as cellulitis. Signs of cellulitis include redness, painful swelling, warm skin and fever, and feeling generally unwell.

See your doctor immediately, as antibiotics may be necessary. Talk to your doctor about an 'in case' prescription for antibiotics, so you can start antibiotics as soon as you notice symptoms. If you have cellulitis several times during the year, taking antibiotics for an extended period may help.

Treating symptoms early will improve management of cellulitis. Having one episode of cellulitis increases the risk of further infections.

Diagnosis and staging

Your practitioner will ask about your medical history and assess the level of swelling and any pitting, thickening or damage to the skin. The size of the affected limb will be compared to the other limb, and any differences assessed.

There are several staging systems used to describe lymphoedema, and the most commonly used in Australia was developed by the International Society of Lymphology (ISL). It divides lymphoedema into mild, moderate and severe – from no swelling to gentle pressure leaving an indent on the skin. In the severe stage, the skin becomes hard and fattier.

It is important for all stages of lymphoedema to receive ongoing treatment and care.

Lymphoedema practitioners

Lymphoedema usually requires care from a range of health professionals, including lymphoedema practitioners.

Lymphoedema practitioners may be an occupational therapist, physiotherapist or nurse with specialist training in treating and managing lymphoedema. They assess people with lymphoedema, develops treatment plans, prescribes compression garments, and provides ongoing treatment and care.

They may work as part of a lymphoedema service in a public or private hospital or in private practice. 

Find a practitioner

Treatment and management

The aim of treatment is to improve the flow of lymph fluid through the affected area. This will help reduce swelling and improve the health of the swollen tissue, lowering risk of infection, making movement easier and more comfortable, and improving wellbeing.

Mild lymphoedema is usually managed with exercise, skin care and a compression stocking or sleeve. Moderate or severe lymphoedema usually requires complex lymphoedema therapy (CLT). Less commonly you may have laser treatment, lymph taping and surgery. 

In general, when treating and managing lymphoedema, you should:

  • offer an unaffected arm for blood pressure monitoring, injections and blood taking
  • keep cool in summer as the heat may make swelling worse – have cold showers, stay indoors during the hottest part of the day and drink plenty of water
  • wear jewellery and clothing that fits well and doesn’t put pressure on the affected area or leave marks on your skin. 

Complex lymphoedema therapy (CLT)

For most people, CLT helps control the symptoms of lymphoedema. It includes a treatment phase and a maintenance phase. During the treatment phase, a lymphoedema practitioner provides a combination of regular skin care, exercises, manual lymphatic drainage (MLD), and compression bandaging.

It may take a few days or up to several weeks to reduce the swelling and then you will be fitted with a compression garment. You will also be taught how to take over the management of your lymphoedema. During the maintenance phase, you continue to look after your skin and exercise regularly.

Wearing the compression garments prescribed by your practitioner will help maintain the improvements made in the treatment phase. It is recommended that you see your lymphoedema practitioner every 6–12 months for regular reviews, but this may vary depending on your circumstances.

CLT consists of the following strategies:

  • Skin care – it is important to keep your skin in good condition to prevent infection.
  • Exercise – regular physical activity such as walking and/or resistance training can reduce the severity and symptoms of lymphoedema by encouraging the lymph fluid to move around the body. It can also help you stay a healthy weight. Flexibility exercises can help maintain your mobility. Resistance exercise can improve your strength plus reduce lymphoedema symptoms.
  • Manual lymphatic drainage (MLD) – a specialised type of massage that is performed by a trained lymphoedema practitioner. Mild pressure is applied to the skin around the affected area to move fluid towards lymph nodes that are draining normally.
  • Simple lymphatic drainage (SLD) – a simplified form of MLD, which your lymphoedema practitioner may teach you or a carer to do daily.

Compression therapy

Compression therapy involves applying graduated pressure to the affected area to reduce and contain swelling, and soften any thickened tissue. Compression for the treatment of lymphoedema needs to be used on an ongoing basis. If stopped, the swelling will usually return. 

There are different ways to apply compression. Bandages and wraps are used to stimulate the lymph fluid, remove the fluid and reduce swelling:

  • applied by a trained lymphoedema practitioner
  • uses inelastic (short-stretch) bandages or wraps
  • changed regularly as the swelling reduces
  • worn day and night.

Compression garments are used to maintain improvements:

  • self-applied (you put them on yourself)
  • worn during the day as soon as possible after getting up – you may wear a lighter garment at night
  • can be off-the-shelf or custom-made
  • may be a stocking (leg), sleeve (arm), glove/gauntlet (hand), bra/singlet/vest (breast or chest), leotard (trunk), bike shorts with padding, or scrotal supports (genitals)
  • available in different skin tones, sizes and grades of pressure
  • garments must be professionally fitted to ensure the pressure and fit are correct
  • handwash garment daily according to the manufacturer’s instructions – this will help it last longer and maintain its compression
  • you will need at least two sets – one to wear and one to wash
  • replace garment regularly (every 6 months or as required) – you need to remeasure for a new garment if your body weight changes or the size of the affected area changes
  • you may need to wear a cotton liner between the compression garment and your skin
  • you may need to use it with additional padding material to increase or spread the local pressure
  • ask your lymphoedema practitioner whether you should wear a garment during airplane travel.

Compression can also be applied by intermittent pneumatic compression (also called a pump):

  • a machine inflates and deflates a plastic garment placed around the affected area to stimulate lymphatic fluid
  • recommended you have MLD or SLD before using the pump
  • can be used at home but it’s important a trained practitioner shows you how to use the pump and adjust the pressure to your needs
  • depending on the type of pump, you either sit or lie down while wearing it
  • may be used for people who are unable to wear a compression garment.

Compression therapy is not suitable for everyone with lymphoedema. It can be dangerous for people with a range of conditions, for example, uncontrolled congestive heart failure or uncontrolled high blood pressure. These conditions need to be under control before you start compression therapy. 

Laser treatment

This treatment uses low-level laser to target cells in the lymphatic system. This may reduce the volume of lymph fluid in the affected area, any thickening of the skin and pain.

Your lymphoedema practitioner will use a handheld device or a larger scanner to apply infra-red-light beams to the affected area. You will not feel any heat. There is some evidence that laser treatment works well when used with lymphatic drainage and compression therapy. Research is still continuing to find the treatment that works best.

Lymph taping

Some early research suggests that a special tape called kinesio tape can help lymph fluid drain from the affected area to working nodes. The tape is different from strapping tape, and your lymphoedema practitioner will tell you whether this could be part of your management plan.

Surgery

Most people are able to manage lymphoedema with CLT, but surgery may be an option when lymphoedema doesn’t respond to other treatments or you are not satisfied with standard treatment.

To work out whether surgery is right for you, your specialist will consider the extent of the swelling, how often you get infections and your general health. It is becoming common to have surgery before the lymphatic system becomes badly affected and the tissues have changed a lot.

As with all surgery, there are significant risks involved. These include scarring, nerve damage, blood clots, infection, loss of mobility, further damage to the lymphatic system, and continuing lymphoedema. Most people still need to wear a compression garment after surgery.

Examples of surgery for lymphoedema include:

  • Liposuction – In some people, the lymphoedema fluid changes into fatty tissue, but CLT doesn’t reduce the fat. Liposuction removes fat from under the skin of the affected area but the limb will look smaller. It should only be an option when CLT cannot reduce the swelling. Liposuction can reduce swelling in the long term and the size of the affected area can be maintained when combined with compression therapy. This treatment is not a cure for lymphoedema – it’s essential to continue wearing a compression garment.
  • Lymphatic reconstruction (anastomosis) – This uses microsurgery to repair or create a new pathway for the lymph fluid to drain out of the area. This technique appears to work better for people with early-stage lymphoedema. Further research on the long-term impact on people who have undergone this surgery is needed.
  • Tissue transfer – This involves transferring healthy lymph nodes from an unaffected area of the body to the affected limb. Further research is required into whether this technique is effective in the long term.

Medicines

There is no proven drug treatment for lymphoedema. Although diuretics (water pills) help remove fluid from the body when it’s caused by heart or blood pressure problems, they don’t work well for lymphoedema as lymph fluids are generally protein rich. Once the diuretic is stopped the fluid usually returns to the area affected by lymphoedema.

There is little evidence to support taking naturopathic medicines or supplements such as selenium to help reduce the symptoms of lymphoedema. High doses of selenium can be harmful. Talk to your doctor before taking any supplements or medicines.

 

Coping with lymphoedema

Looking after your wellbeing

Lymphoedema can cause physical and emotional strain, so it’s important to look after your wellbeing. Having lymphoedema can affect how you feel about yourself in several ways.

Some people find it helpful to talk with family and friends, while others seek professional help from a counsellor. You may find it helpful to talk with other people who are dealing with lymphoedema

Get support

Paying for treatment

Treatment for lymphoedema can be expensive. Costs for seeing practitioners and buying compression garments often add up and you may need time off work for appointments or to manage infections. There are options to help with treatment costs:

  • If your GP refers you to a lymphoedema practitioner as part of a Chronic Disease Management Plan, you may be eligible for a Medicare rebate for up to five visits each year.
  • Compression garment subsidy schemes are run by most state and territory governments. These schemes cover some, or all, of the cost of compression garments.
  • If you have private health insurance, check with your provider whether you are entitled to a rebate on compression garments.

Get financial assistance 

 

Understanding Lymphoedema

Download our Understanding Lymphoedema fact sheet to learn more

Download now

 

Expert content reviewers:

Anya Traill, Head, Occupational Therapy and Physiotherapy, Peter MacCallum Cancer Centre, VIC; Dawn Bedwell, 13 11 20 Consultant, Cancer Council QLD; Gillian Buckley, Senior Physiotherapist – Lymphoedema, Peter MacCallum Cancer Centre, VIC; Asha Heydon-White, Senior Physiotherapist and Lymphoedema Therapist, MQ Health Lymphoedema Clinic, ALERT – Australian Lymphoedema Education Research and Treatment, Macquarie University, NSW; Prof Sharon Kilbreath, Deputy Dean, Academic, Discipline of Physiotherapy, Faculty of Health Sciences, The University of Sydney, NSW; Pamela Lamont, Consumer; Prof Neil Piller, Vice Chair, International Lymphoedema Framework, Director, Lymphoedema Clinical Research Unit, Patron, Lymphoedema Support Group SA; Hildegard Reul-Hirche, Physiotherapist, QLD.

Page last updated:

The information on this webpage was adapted from Understanding Lymphoedema - A guide for people affected by cancer (2019 edition). This webpage was last updated in August 2021.

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