Assessing lymphoedema

Lymphoedema assessment

Your lymphoedema specialist assesses lymphoedema using the 5S score. A lymphoedema specialist may be a:

• nurse

• doctor

• physiotherapist

• occupational therapist

• manual lymph drainage specialist

By assessing the lymphoedema they can form a treatment plan.

The 5S’ include:

• skin

• subcutaneous tissue – this is the tissue underneath the outer layers of the skin

• site

• size

• shape

Skin

Your specialist will look out for and assess any changes in your skin. These could include:

• if the skin is intact or not

• dryness - your skin may be flakier or feel tight

• changes in colour - the area may be redder or paler than usual. On black or brown skin, the skin might be darker than the surrounding area

• how delicate, fragile or sensitive your skin is

• the temperature – is it warm or cool?

• signs of infection, such as redness or heat

• thickening – this is sometimes called fibrosis

• creases or folds in your skin may be more noticeable

• any leaking of fluid from the skin

During your assessment, the specialist will also look for any problems with blood flow that might affect the treatment you can have.

Subcutaneous tissue

To assess subcutaneous tissue, your specialist tests to see if there is extra fluid collecting between the tissues under the skin. They do this by applying pressure using a finger to your skin to see if it leaves a temporary dent (pit). This is known as pitting oedema.

Other ways include:

• pinching the skin at the base of your second toe or finger – if the skin is unable to be pinched, this could be a sign of lymphoedema

• the texture of the skin, such as the skin might look like orange peel (peau d’orange) or dimpling

• looking to see if the skin is stretched or tight

Site

This is looking at exactly where the lymphoedema is. For example, if the lymphoedema is in the arm, checking to see if it spreads down into the fingers or not. Or if it spreads beyond the arm into the shoulder or breast area.

Size

This is the measurement of the affected area using a tape measure and other measuring devices. These tools can help calculate the volume and amount of extra fluid in the tissues.

We have more information about measuring the amount of swelling further down this page.

Shape

This is looking at the physical changes the lymphoedema may be causing. Changes include:

• if there is a large collection of fluid in an area

• if it’s just affecting one side of the body

• if there are any skin folds or creases in the affected area

• if there are any pressure related signs of lymphoedema, such as marks or dents from footwear

• In the very early stages of lymphoedema you might not see a change or it might be very mild

Stages of lymphoedema

Your 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 you raise your arm or a leg (limb). 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 you raise your limb. The skin may become dry and feel thick. The skin becomes tighter as the subcutaneous fat under the skin increases. You also have pitting oedema.

Late stage 2

You may or may not have pitting oedema, 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 as wart like growths (papillomas).

Measuring the amount of swelling

If you have swelling in a 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.

Other ways of measuring lymphoedema

There are other ways of measuring swelling.

Using an infrared beam (perometry)

The specialist uses an infrared light to measure the outline of the limb and then works out the size of the swollen area.

Using an electrical charge (bioimpedance spectroscopy)

The specialist puts small discs on parts of your body. These discs release a small, painless electric charge. They measure resistance in body tissue so your specialist can work out the amount of swelling.

Water displacement

The affected limb is placed in a vessel or bowl of water. Your specialist measures the amount of water that’s displaced to work out the size of the limb.

Measuring device that can detect the water content

Your specialist might use a portable measuring device that can detect the water content. This allows them to assess the amount of water in the tissues. They are also known as a LymphScanner.

Checking for changes

You will become an expert in the changes in size of the swollen area. It could change from day to day, depending on what you’re doing. So remember that one measurement does not necessarily reflect whether treatment is working or not.

Talk to your specialist if you have any changes. It helps not to focus too much on single measurements.

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 specialist 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 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