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Diagnosing and assessing lymphoedema

This page tells you about how doctors and specialist nurses diagnose and assess lymphoedema. You can find out about

 

A quick guide to what’s on this page

Your doctor or nurse usually makes a diagnosis of lymphoedema by examining you, asking you about your symptoms, and taking a medical history. If there is any uncertainty about what is causing the swelling you will have some tests.

The tests will depend on where you have swelling but may include blood tests, an ultrasound scan, a CT scan or an MRI scan. Your doctor may ask you to have a special scan of the lymphatic system called lymphoscintigraphy.

Your nurse or physiotherapist will also assess

  • The amount of swelling – whether it is mild, moderate or severe
  • Your skin and tissues – they look for dryness, changes in colour or warmth, signs of infection, thickening, creases, and any leaking of fluid
  • Your symptoms, such as aching or pain
  • How well you can move – if the swelling is stopping you from moving normally, you may need help to work out how to cope and how to get back as full a range of normal movement as possible
  • Your diet and the amount of exercise you do – being overweight can make lymphoedema more difficult to manage and they will help you with any changes you may need to make

 

CR PDF Icon You can view and print the quick guides for all the pages in the About lymphoedema section.

 

 

Diagnosing lymphoedema

If you have any swelling that could be lymphoedema after treatment for cancer you should see your doctor or specialist nurse. They will examine you, ask about other symptoms, and go over your medical history. This is to rule out other things that can cause swelling, including blood clots. If there is any uncertainty about what is causing the swelling you will need to have some tests.

If you are diagnosed with lymphoedema your doctor will refer you to a specialist. The lymphoedema specialist may be a nurse, doctor or physiotherapist. They may be based in your local hospital or in a specialist centre. In a few lymphoedema centres, you can refer yourself. The lymphoedema specialist will assess your lymphoedema to work out which treatment you need.

The British Lymphology Society has a directory of lymphoedema services. If you have problems getting help, the Lymphoedema Support Network gives information about how to find NHS services.

 

Assessing lymphoedema

Your specialist nurse or physiotherapist will do a full assessment. They look at

The amount of swelling

The lymphoedema specialist will first assess how much swelling you have. This is much easier to assess if you only have lymphoedema on one side of your body. For example, if you have lymphoedema in one of your arms or legs, the specialist can easily compare it with the unaffected one. The specialist will work out whether the swelling is

  • Mild
  • Moderate
  • Severe

It is more difficult to assess lymphoedema in the head and neck, chest, breast or genital area. Your specialist may ask you to have photos taken so they can compare them in future and see how well treatment is working.

The specialist can measure swelling of your limbs in different ways. The most common way is by using a tape measure. The specialist makes marks at regular intervals up your arms or legs from a point on your hand or foot. They measure around the limb (the circumference) at those intervals. They call these circumferential limb measurements. They can then compare the size of one limb with the other.

Other ways of measuring include

Using an infrared beam (perometry). The specialist uses an infrared light beam to measure the outline of the limb and then work out the volume of the area. It is not widely available.

Using an electrical charge (bioimpedance). The specialist uses an electrical charge to find out how resistant body tissue is and work out the amount of swelling. This is a new way of measuring and is not widely available. It may not be very accurate at detecting early or mild lymphoedema.

You will become an expert in the changes in size of the swollen area. It may change from day to day depending on what you are doing. So remember that one measure does not necessarily reflect whether treatment is working or not. If you have any changes, talk to your specialist nurse or physiotherapist. It helps not to focus too much on single measurements.

Skin and tissue assessment

The changes in your skin that you and your specialist might notice and look for include

  • Dryness – your skin may be more flaky or feel tight
  • Changes in colour – the area may be redder or paler than usual
  • How delicate, fragile or sensitive your skin is
  • Warmth or coolness
  • Signs of infection, such as redness or heat
  • Thickening – your skin may become thicker (sometimes called fibrosis)
  • Creases or folds in your skin may be more noticeable
  • Pitting (when pressed the skin stays dented for a while) or dimpling
  • Any leaking of fluid from the skin

During this assessment the nurse or physiotherapist will also look for any problems with blood flow in the area that might affect the treatment you can have.

Aching or pain

Some people who have lymphoedema have aching or pain in the swollen area. This may be due to inflammation or because the skin is stretched. The specialist will ask whether you have any pain and if anything makes it worse, such as moving around. If the swollen limb is heavy or you haven’t been able to use it as usual, sometimes the joints and muscles can ache or feel painful. If you have pain talk to your nurse or physiotherapist.

Assessing your diet

We know from research that if you are very overweight (obese) your risk of developing lymphoedema after breast cancer is higher. It is also more difficult to control than if you are a normal weight . Being overweight may also make lymphoedema more difficult to control. This may be because people who are very overweight are likely to find it more difficult to move around.

If you are very overweight your specialist may refer you to a dietician to help you look at ways of losing weight. Eating a healthy well balanced diet will also help to reduce your risk of other health problems related to being overweight. There is information about a healthy diet on our healthy living website.

Moving and functioning

If you have difficulty moving around because of your lymphoedema you may need help to work out how to cope. Your doctor or nurse can refer you to an occupational therapist to see if there is any equipment that could help you. Sometimes people start to walk or move differently when they have swelling, which over time can lead to a limited range of movement. A physiotherapist can help you keep as full a range of movements as possible so that you can do normal, everyday things, such as reaching up to a cupboard.

 

Tests

If there is any uncertainty about what is causing your swelling, your doctor will arrange for you to have some tests. These tests will look for other possible causes of your swelling such as blood clots, cancer, heart disease or other medical conditions. The tests may include

Ultrasound scan

Ultrasound scans (USS) use sound waves to build up a picture of the inside of your body. They can help to show what is causing swelling, for example, scar tissue or cancer. They can also check the thickness of skin and tissue. When there is thickening, doctors call this fibrosis.

You may also have a Doppler ultrasound scan. This uses colour pictures to show the structures in the body. It shows up any blood clots in the area, which may be causing the swelling.

CT scan or MRI scan

CT scans use a series of X-rays to build up a picture of the inside of your body. MRI scans use magnetic fields. These scans can help to work out what is causing the swelling. They also check for cancer. MRI scans can show if there is thickening of the tissue in the area.

Testing your lymphatic system

Doctors call this test lymphoscintigraphy (lim-fo-sin-tig-raffee).

You have an injection of a small amount of radioactive substance into the lymph vessels near the swelling. Then you have a scan. The scan shows the dye moving through the lymphatic system and shows up any blockages.

Blood tests

You may also have blood tests to

  • Check your general health
  • Check how well your liver and thyroid gland are working
  • Measure the amount of protein in your blood
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Updated: 1 April 2014