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 (belly) and chest areas. This happens because the lymphatic system is not working properly. It usually occurs in an arm or leg, but can also affect other parts of the body, such as the neck.

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

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, and the incidence differs for each cancer type.

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

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 helps to reduce the impact of lymphoedema.

Early warning signs

Taking action quickly can reverse mild lymphoedema and help reduce the risk of developing severe lymphoedema. As soon as you notice any warning signs in the affected area, it’s important to see your lymphoedema practitioner or doctor. Early warning signs include:

  • 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 (or on waking for head and neck cancer)
  • 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 

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
  • taxane-based chemotherapy drugs
  • an infection in the limb at risk of developing lymphoedema
  • carrying extra body weight (overweight or obesity)
  • injury of the lymphatic system – for example, a tumour growing near a lymph node or vessel can block the flow of lymph fluid
  • underlying primary lymphoedema
  • inflammatory disorders such as arthritis
  • 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

Look after your skin

Exercise regularly

Maintain a healthy body weight

Tips for travelling

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.

If lymphoedema is diagnosed, it will be staged from 0 (least severe) to 3 (most severe). All stages of lymphoedema need 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, develop 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 (stages 0-1) is usually managed with exercise, skin care and compression therapy. Moderate or severe lymphoedema (stages 2–3) usually needs complex lymphoedema therapy (CLT). Less commonly, you may have laser treatment, lymph taping and surgery.

Lymphoedema treatments

Skin care

Exercise

Massage therapy

Compression therapy

Intermittent pneumatic compression (often called a pump)

Complex lymphoedema therapy (CLT)

Laser treatment

Lymph taping

Surgery

Medicines

 

Caring for the affected area

If possible, you should:

  • keep cool in summer as the heat may make swelling worse – have cold showers, stay indoors during the hottest part of the day, avoid sunburn, and drink plenty of water
  • wear clothing and jewellery that fits well and doesn’t put pressure on the affected area
  • tell health professionals that you have lymphoedema (or are at risk of lymphoedema) before having blood taken, injections, blood pressure monitoring or other procedures – it may be safe to use the affected arm, but your health professional will discuss this with you.

Coping with lymphoedema

Looking after your wellbeing

Lymphoedema can affect your body and mind, 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

Paying for treatment

Treatment for lymphoedema can be expensive. There are options to help with these 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 all state and territory governments. There are also some federal subsidies through the Department of Veterans’ Affairs. These schemes cover some, or all, of the cost of compression garments. People with permanent and significant disability may be eligible for support through the National Disability Insurance Scheme. For more information, visit lymphoedema.org.au.
  • If you have private health insurance, check with your provider whether you are entitled to a rebate on compression garments and lymphoedema therapy.

 Get  financial and legal support.

Understanding Lymphoedema

Download our Understanding Lymphoedema fact sheet to learn more

Download now  

 

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