Symptoms of lymphoedema

The most common symptom of lymphoedema is swelling. Some people also feel heaviness or aching in the affected area. 

Lymphoedema symptoms related to cancer treatment might develop when:

• the cancer blocks a lymph node or some lymph vessels
• you have treatment for cancer to remove lymph nodes. Or treatment that damages the lymph nodes or part of the lymphatic system

Symptoms can appear at any time after cancer treatment.

It is usual to have some swelling around the surgical site after surgery. This should begin to settle soon after your surgery. Let your nurse or doctor know if the swelling does not go down or comes back.

What is lymphoedema?

Lymph fluid is in all body tissues. It comes from the tiny blood vessels into the body tissues. Normally it drains back into the bloodstream through channels called lymph vessels. These are part of the lymphatic system.

Blocked, removed or damaged lymph drainage channels or lymph nodes cause a build up of lymph fluid. This is the swelling called lymphoedema.

First symptoms of lymphoedema

One of the first symptoms you might notice is swelling in part of the body. Your clothes, shoes, or jewellery may become tighter.

Other symptoms can include:

• a feeling of heaviness in the area affected
• a tightness of the skin or aching in the affected area. You might feel this before you develop any swelling
• tingling feeling in the area. This symptom is less common

The swelling may be soft and easy to push in with your fingers, leaving a dent (called pitting oedema). The swelling may also be non-pitting.  

There are other reasons why people develop swelling. But if you notice any swelling that doesn’t go away, contact your doctor.

Symptoms of lymphoedema in the head and neck

After surgery to remove some or all the lymph nodes in your neck or radiotherapy to lymph nodes in your neck, the area can become swollen. This can be due to general swelling. But it can also be a sign of lymphoedema.

Lymphoedema in the head or neck can also cause symptoms inside your mouth and throat. This may include swelling of your tongue and other parts of your mouth.

Tell your doctor or nurse if you:

• have any swelling or a feeling of fullness or pressure
• find it difficult to swallow
• have changes in your voice

Symptoms of lymphoedema in the genital area

Lymphoedema in the genital area can cause a feeling of heaviness and discomfort.

This can affect the scrotum, foreskin, and penis in men. In women, it can affect the vulva clitoris and labia, and lower tummy (pelvis).

Other symptoms that people might have with genital lymphoedema include:

• swelling in one or both legs
• difficulty having a wee
• finding it difficult to move about

These symptoms can affect your sex life due to the discomfort of the swelling. 

The skin in the area can feel thicker and harder. And you may be more at risk of developing an infection. 

What to do if you have symptoms of lymphoedema

Not everyone gets lymphoedema and swelling is not always due to lymphoedema. But it is important to know the signs and symptoms. Lymphoedema can start to develop soon after cancer treatment or it can take longer. This might be months or even years.

The Lymphoedema Support Network can tell you how to get lymphoedema care within the NHS.

The British Lymphology Society has a directory of lymphoedema services.

Severe lymphoedema symptoms

Without treatment, your symptoms might change over time. The swollen area could become more swollen, harder, and more painful.

You might also have:

• pins and needles or tingling
• a numb feeling
• reddening of your skin, which may become hard and stiff
• more difficulty moving the affected area
• pain
• pitting – indents in your skin
• a change in the shape of your arm or leg
• skin infections and a change in the texture of your skin
• watery fluid (lymph fluid) leaking from your skin

Support for you

Lymphoedema can also affect you emotionally. You can get help and support with this, so ask for help from your treatment team if you need it.