Diagnosing lymphoedema

Your hospital doctor or nurse will arrange for you to see a lymphoedema specialist if you have swelling that may be caused by your cancer treatment.

Diagnosing lymphoedema early is important, so you can start treatment to reduce and control the swelling as soon as possible.

You might notice some swelling soon after your treatment. Or it can develop months or years after your cancer treatment. Let your specialist nurse know if you have any swelling. People who have swelling and no longer have follow up appointments at the hospital should see their GP as soon as they notice any swelling. 

Examination and medical history

Speak to your doctor or specialist nurse if you have swelling that could be caused by cancer or its treatment. They can check whether you have lymphoedema.

Your doctor or nurse will examine you and ask if you have any other symptoms. They'll also go over your medical history. This is so they can rule out other things that can cause swelling, such as blood clots. For many people, an examination and your medical history may be all that’s needed to confirm a diagnosis of lymphoedema.

You’ll need to have some tests if they’re not sure what’s causing the swelling.

Referral to a lymphoedema specialist

Your doctor will refer you to a lymphoedema specialist if they think you have lymphoedema. The lymphoedema specialist may be a:

• nurse
• doctor
• physiotherapist

Your local hospital might have a lymphoedema specialist. Or you might need to go to a specialist centre. In a few lymphoedema centres, you can refer yourself. The lymphoedema specialist will assess your swelling. They will work out which treatment you need.

The British Lymphology Society has a directory of lymphoedema services.

The Lymphoedema Support Network also gives information about how to find NHS services and gives support to people with lymphoedema.

Tests

You might have some tests if your doctors are not sure what is causing your swelling. The tests can check for other possible causes, such as:

• blood clots
• cancer
• heart disease
• other medical conditions

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 the swelling, for example, scar tissue or cancer. They can also check the thickness of skin and tissue. When there is thickening, this is called fibrosis.

You might also have a Doppler ultrasound scan. This uses colour pictures to show the structures in the body. It can show up blood clots.

CT or MRI scan

CT scans use a series of x-rays to build up a picture of the inside of your body. An MRI is a type of scan that creates pictures using magnetism and radio waves. MRI scans produce pictures from angles all around the body.

Doctors don't normally use these scans to diagnose lymphoedema. They might use it to check that cancer is not causing your swelling.

Blood tests

You might 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