Symptoms and diagnosis of lymphoedema

Diagnosing lymphoedema early will help manage symptoms and control swelling. The symptoms of early lymphoedema include:

  • swelling of the affected area or limb
  • change in sensation (the limb or area feeling heavy, tight, full or stiff)
  • skin changes
  • aching.

Symptoms vary depending on whether lymphoedema is mild, moderate or severe. In early lymphoedema, the swelling may not be very noticeable, but pressure might leave a mark on the skin. In later stages, the skin often hardens and there may be more complex skin problems. Severe lymphoedema may affect your ability to do everyday things.

Treatment can improve lymphoedema. The earlier it is started, the more likely it is to be successful. If you notice any swelling or tightness, tell your doctor or specialist nurse. They can examine the area and do tests for lymphoedema.

If they think you may have lymphoedema, you should be referred to a lymphoedema specialist. The lymphoedema specialist will confirm the diagnosis and discuss the treatment that may help to manage it.

Signs and symptoms of lymphoedema

The signs and symptoms of early lymphoedema include:

  • swelling – you may notice your clothing, shoes or jewellery (rings or watches) feeling tighter than usual, even before you see any swelling
  • changes in sensation – the limb or area may feel heavy, tight, full or stiff
  • skin changes – the affected area may feel tight, stretched or a thicker texture, and sometimes it can be dry, flaky, rough or scaly
  • aching in the affected area.

If you have any of these symptoms, ask your doctor or specialist nurse for advice as soon as you notice them. This can help to reduce the risk of the lymphoedema getting worse.

My groin started to swell and it was really sore. I phoned the helpline and they told me it’s because the lymphatic fluid has nowhere to go. So it has just collected in the body.

Mark


Other symptoms

The symptoms vary depending on how much lymphoedema there is whether it is mild, moderate or severe.

At first you may not notice any swelling. Or gentle pressure may leave an indent on the skin (pitting oedema).

In later stages, the skin tissue often hardens or becomes more fatty. There may also be more complex skin problems. Sometimes, lymph fluid leaks from the skin (called lymphorroea). This is due to fluid building up in the tissues, or damage to the skin.

If the lymphoedema is more severe, it may be difficult to move about and do everyday things. Or it may change the normal shape of the affected limb.

My arm swelled and it was lymphoedema. It’s taken fourteen years to affect me. But with exercise and wearing a sleeve, it’s under control.

Rashid


Diagnosis

If you have any signs or symptoms of lymphoedema, contact your hospital doctor, specialist nurse, physiotherapist or GP. Treatment can improve lymphoedema. The earlier you start treatment, the more successful it is likely to be.

Your doctor, specialist nurse or physiotherapist will ask you about the signs or symptoms you have. They will also look at the swollen limb or area. Knowing which cancer and treatments you have had helps them assess whether lymphoedema is causing your symptoms.

Not all swelling is lymphoedema. Sometimes, you need tests to make sure nothing else is causing the swelling, like a blood clot. You may have scans, to see whether a cancer that is affecting the lymph nodes is causing the lymphoedema.

Lymphoedema specialist

If your doctor, specialist nurse or physiotherapist thinks you have lymphoedema, they should refer you to a lymphoedema specialist. The lymphoedema specialist will then confirm the diagnosis. Health professionals with specialist knowledge in treating lymphoedema may include:

  • specialist lymphoedema nurses
  • breast care nurses
  • doctors
  • physiotherapists
  • occupational therapists.

In this information, the term lymphoedema specialist refers to any one of these health professionals.

Organisations such as the Lymphoedema Support Network and the British Lymphology Society can advise about specialist services near you. The Lymphoedema Support Network also has advice for GPs who are having difficulty referring to a lymphoedema service.

Assessment

The lymphoedema specialist will assess how much the lymphoedema is affecting you.

Your specialist will:

  • ask you about your medical history
  • check your skin and look for any changes
  • assess the size and shape of the area
  • assess how the tissue feels under the skin
  • measure your limb and compare it to the unaffected limb
  • check your movement and ability to do everyday things.

If it is difficult to diagnose lymphoedema, you may have other tests.

Your lymphoedema specialist should always carry out a full assessment. This is so they can decide the best way to treat the lymphoedema.