Assessing lymphoedema

Stages of lymphoedema

Your lymphoedema specialist will usually stage your lymphoedema. Staging is a way of describing how severe your lymphoedema is. This helps your specialist create a treatment plan that is right for you. The stages are between 0 and 3 

Stage 0

This is when someone is at risk of developing lymphoedema but does not have signs of swelling.

For example, a person who has had cancer treatment involving lymph nodes. This could be surgery, radiotherapy, or both. This stage may last months or years. And some people will not develop lymphoedema.

Stage 1 (mild lymphoedema)

The swelling starts to appear, and the skin can look puffy. In this stage, the swelling might go down, for example when a limb is raised. The skin feels soft and may leave an impression when you press on it. This is known as pitting oedema.

Stage 2 (moderate lymphoedema)

The swelling increases and doesn’t go away when the limb is raised. The skin may become dry and feel thick. The skin becomes tighter as the subcutaneous fat under the skin increases. Pitting oedema may be seen but it’s more difficult to assess due to the thickening (fibrosis) of the skin. 

Stage 3 (severe lymphoedema)

This is when there is a lot of swelling. The skin can become very dry and thick and may look darker in places. Skin changes can appear, such wart like growths (papilloma).

Measuring the amount of swelling

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

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

Measuring swelling using 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 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 your 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, heaviness, or pain in the swollen area. This might be because the area is inflamed or because it's increased in size.   

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

Talk to your nurse or physiotherapist if you have pain.

Assessing your diet

We know from research that if you’re overweight, your risk of developing lymphoedema after breast cancer is higher. Being overweight might also make lymphoedema more difficult to control.

If you are 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.

Get information about a healthy, balanced diet

Moving and functioning

Lymphoedema can sometimes make it difficult to move around or move the part of the body that’s affected by swelling. You might need help to work out how to cope. Your lymphoedema specialist 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. This can help with everyday movement such as reaching up to a cupboard.

Find out about lymphoedema treatments