Lymphoedema is swelling (oedema) that occurs when lymph fluid builds up in the tissues under the skin. This happens because the lymphatic system is not working as it should 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 (having an underdeveloped lymphatic system) or secondary. This information is only about secondary lymphoedema following treatment for cancer.

Secondary lymphoedema results from damage to the lymphatic system, including from cancer or cancer treatment. Sometimes lymph nodes and lymph vessels are removed or damaged during surgery or radiation therapy, 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.

Swelling can be a temporary effect of surgery or radiation therapy. If it continues for more than three months, it is called secondary lymphoedema and is a chronic (long-term) condition.

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When does lymphoedema develop?

Lymphoedema can affect people at any stage: during active treatment, when cancer free or in remission, while living with advanced cancer, or during palliative treatment. Lymphoedema can also develop months or years after treatment.

Though lymphoedema may be ongoing, it can usually be well managed, particularly if diagnosed early. If left untreated, lymphoedema can cause a range of problems, including:

  • scarring and thickening of the skin (fibrosis)
  • discomfort and sometimes pain
  • difficulty in completing your usual activities due to a reduced range of movement
  • difficulty in fitting into clothes or shoes
  • an increased risk of infections and of small infections becoming more serious (see Identifying and managing infections)
  • lymph fluid seeping from the skin (lymphorrhea)
  • very rarely, it can lead to lymphangiosarcoma, an uncommon soft tissue cancer.

What are the risk factors?

Not all people treated for cancer will get lymphoedema. Whether or not you develop lymphoedema after treatment for cancer depends on the location of the cancer, its stage and the type of treatment. Some people who are at risk never develop it.

Some factors increase the risk:

  • certain types of cancer that affect the lymphatic system, e.g. a tumour growing near a lymph node or vessel can block the flow of lymph fluid
  • surgical removal of 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
  • radiation therapy that causes scarring and thickening of the lymph nodes and lymph vessels
  • 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)
  • being overweight or obese
  • an existing problem with the lymphatic system
  • certain chemotherapy drugs (talk to your oncologist if you are concerned)
  • rheumatoid arthritis
  • having reduced mobility.

In some hospitals, you may be able to see a lymphoedema practitioner who will assess your risk of developing lymphoedema. They may also teach you some simple exercises to do after treatment to help reduce your risk and regain movement.

Starting an exercise program early in treatment, looking after your diet and managing your weight may lower the risk of developing lymphoedema. For more information, see Exercise during treatment and Nutrition and cancer. After surgery, it is important to take good care of your skin and keep it moisturised. It can also be helpful to massage any scar tissue.

How common is lymphoedema?

Lymphoedema can occur following treatment for many different cancers. There is little statistical evidence 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, melanoma or prostate cancers.

Areas typically affected by lymphoedema following cancer treatment include:

  • breast cancer – armpit, arm, hand, breast or chest
  • head and neck cancers – neck, below the chin or face
  • melanoma – neck, arm or leg
  • bladder – genitals or legs
  • cervical – legs
  • ovarian – genitals or leg
  • prostate – legs, abdomen/trunk or genitals
  • uterine – legs
  • vulvar/vaginal – genitals or legs.

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 around the body.

Lymph fluid – 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 nodes (glands) – Small, bean-shaped structures found along the lymph vessels. Lymph nodes are located throughout the body, including the neck, underarms, chest, abdomen 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, spleen, bone marrow, thymus, tonsils and some tissues in the digestive tract.

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

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