Diagnosing and assessing lymphoedema

Your doctor or specialist nurse can diagnose lymphoedema. They will then refer you to a lymphoedema specialist, who will assess and monitor it.

Diagnosing

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.

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

Your doctor will refer you to a specialist if they diagnose you with 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.

Assessing lymphoedema

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

  • the amount of swelling
  • your skin and tissues
  • whether you have aching, pain or other symptoms
  • your diet
  • how well you can move

The amount of swelling

If you have swelling in an arm or a leg, the specialist can compare the swollen limb with the unaffected one. They can assess how much swelling you have. 

The specialist can measure swelling of your limbs in different ways. The most common way is with a tape measure.

Starting with a point on your hand or foot, they make marks at regular intervals up your arms or legs. 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.

They will work out whether the swelling is:

  • mild
  • moderate
  • severe

It’s more difficult to assess lymphoedema in the head or neck, chest, breast or genital areas.

Your specialist might ask you to have photos taken. This way they can compare ‘before and after’ to see how well the treatment is working.

Skin and tissue assessment

Your specialist will look out for and assess any changes in your skin. These could 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 an assessment, the nurse or physiotherapist will also look for any problems with blood flow 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 might be because the area is inflamed or the skin is stretched. Sometimes you might have pain if you've overused your limb.

The specialist will ask whether you have any pain. They’ll also ask if anything makes it worse, such as moving around. The swollen limb’s joints and muscles can sometimes ache or feel painful if the limb is heavy or you haven’t been able to use it as usual.

Talk to your nurse or physiotherapist if you have pain.

Assessing your diet

We know from research that if you’re very overweight (obese), your risk of developing lymphoedema after breast cancer is higher.

Being overweight might also make lymphoedema more difficult to control. This could be because overweight people can find it more difficult to move around.

If you’re very overweight, your specialist might refer you to a dietitian to help you look at ways of losing weight.

Eating a healthy, well balanced diet also helps to reduce your risk of other health problems that can come from being overweight.

Moving and functioning

Lymphoedema can sometimes make it difficult to move around. You might need help to work out how to cope. Your doctor or nurse can refer you to an occupational therapist for advice on equipment that could help you.

Sometimes people start to walk or move differently when they have swelling. Over time, this can limit your range of movement.

A physiotherapist can help you keep as full a range of movements as possible. Then you can do normal, everyday things like reaching up to a cupboard.

Tests

You might have some other 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

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