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What is lymphoedema?

This information has been prepared to help you understand more about secondary lymphoedema, a possible side effect of cancer treatments. When using the term lymphoedema, it refers to secondary lymphoedema. We hope this information will help you, your family and friends understand what lymphoedema is, how to recognise signs early and how it can be managed.

About 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. Lymph vessels 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 – As well as lymph nodes, lymph tissue is found in other parts of the body including the spleen, bone marrow, thymus, tonsils and some lymph tissue in the 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.

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 of the body.

Lymphoedema can be either primary (when the lymphatic system has not developed properly) or secondary. This information is only about secondary lymphoedema following treatment for cancer.

Cancer or cancer treatment can damage or block the lymphatic system, which can stop the lymphatic system from working properly. This means that lymph fluid doesn’t drain as it should and instead builds up in the tissues, causing swelling.

Some common questions about lymphoedema are below.

Lymphoedema 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. It usually develops slowly.

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; having a sentinel lymph node biopsy
    reduces the chance of getting lymphoedema but it can still occur in a small number of people
  • radiation therapy that causes scarring and thickening of the tissues and often the lymph nodes and lymph vessels
  • taxane-based chemotherapy drugs (talk to your oncologist if you are concerned)
  • an infection in the limb at risk of developing lymphoedema (i.e. the arm or leg on the side where the lymph nodes were removed)
  • 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 (underlying primary lymphoedema)
  • rheumatoid arthritis
  • being overweight or obese
  • not being able to move around easily.

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.

Commonly affected areas of some cancer types

bladder – genitals, legs

breast – arm, hand, breast, chest, trunk

cervical – genitals, legs

head and neck – face, below chin and/or neck

melanoma – any part of the body such as face, neck, hand, forearm, upper arm or whole arm, breast and/or chest wall, legs

ovarian – genitals, abdomen/trunk, legs

prostate – legs, abdomen/trunk, genitals

uterine – legs

vulvar/vaginal – genitals, legs

Because lymphoedema is easier to manage and treat in its early stages, it is important to look out for any signs that you are developing  lymphoedema and to see your lymphoedema practitioner or doctor soon after they appear. If you are at risk of developing lymphoedema, see a lymphoedema practitioner for regular check-ups rather than waiting for signs to appear. Taking action at an early stage can help reduce the risk of developing lymphoedema and the severity of lymphoedema if it does develop.

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).

If you are unsure whether any symptoms are an early sign of lymphoedema, contact a lymphoedema practitioner. You can ask your general practitioner (GP) or specialist to refer you to a lymphoedema practitioner for assessment.

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 (this is known as lymphorrhea)
  • very rarely, the development of lymphangiosarcoma, a soft tissue cancer.

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. These suggestions are also useful for people living with lymphoedema.

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.

Download our booklet ‘Exercise for People Living with Cancer’

Maintain a healthy body weight
  • Aim to stay in a healthy weight range. Being overweight can be a risk factor for developing lymphoedema. If you are overweight, talk to your doctor about how to achieve a healthy weight.
  • 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.

Download our booklet ‘Nutrition for People Living with Cancer’

How an infection starts

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.

Who is at risk

People with lymphoedema are at higher risk of getting a serious infection known as cellulitis.

Signs of cellulitis

Redness, painful swelling, warm skin and fever, and feeling generally unwell.

When to start treatment

See your doctor immediately, as antibiotics may be necessary. Treating symptoms early will improve management of cellulitis. Having one episode of
cellulitis increases the risk of further infections.

When to take antibiotics

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.

Featured resource

Understanding Lymphoedema

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This information is reviewed by

This information was last reviewed May 2019 by the following 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.

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