Lymphoedema and sarcoma

What is lymphoedema?  

Lymphoedema is a swelling caused by a build-up of fluid in the tissues under the skin. 

Some treatments for sarcoma, such as radiotherapy and surgery, can damage the lymphatic system and cause lymphoedema. There is no current cure for lymphoedema, so treatment aims to keep it under control.

The lymphatic system 

The lymphatic system is an important part of the body’s immune system. It helps protect us from infection and disease. It also gets rid of waste products through the blood stream, which we eventually remove through pee.

Symptoms of lymphoedema  

The most common symptom of lymphoedema is swelling in the arm or leg affected by treatment. 

Other symptoms include:

• a feeling of heaviness or tightness 
• limited range of movement 
• aching or discomfort 
• infections that keep coming back  
• hardening and thickening of the skin. 

Lymphoedema does not appear directly after treatment. So, you may not get symptoms for several weeks, months or even years after your treatment for sarcoma.

I think I have lymphoedema  

It is normal to have swelling after surgery or radiotherapy, as this is part of healing. Your specialist should tell you how long swelling after surgery or radiotherapy will last. It might be lymphoedema if:  

• the swelling changes in colour (gets darker or more red) 
• feels more tender  
• feels warm to the touch 
• has lasted longer than 3 months.  

If you think you have lymphoedema you should speak to your sarcoma clinical nurse specialist or speak to your GP. You can also call our Support Line for help.  

Preventing lymphoedema 

We hear from a lot of people with sarcoma that lymphoedema can be embarrassing. It’s important to know that the earlier you notice it and get it treated, the easier it will be to control.  

While you are at risk of getting lymphoedema, not everyone who has sarcoma treatment will get it.

You can reduce your chances of getting lymphoedema with our advice on this page.   

Look after your skin

Do

• Keep your skin clean  
• Moisturise with a gentle moisturiser  
• Cleanse any cuts or scratches thoroughly, or use antiseptic cream  
• Use compression stockings  
• Use SPF suncream to avoid getting sunburnt  
• Use insect repellent to avoid bites which can risk infection  

Don’t  

• Do not use perfumed lotions, as they can dry the skin  
• Do not get an injection such as a flu jab at the area at risk (if possible)  
• Do not have blood taken from the area at risk  
• Do not get a tattoo in any area at risk  
• Do not scratch or cut the skin

Look out for risks of infection 

Skin infections can damage your lymphatic system and cause lymphoedema in an area of the body that is at risk. 

Signs of possible infection in an area at risk of lymphoedema can include:

• swelling and redness or darkening in colour
• skin feeling hot 
• discomfort and pain 
• flu-like symptoms. 

If you have an infection in an area at risk of lymphoedema it is important to get treated quickly so that it does not damage the lymphatic system. Your GP can prescribe you with antibiotics to treat the infection. 

Keep to a healthy weight and stay active 

If you are overweight, it can increase your risk of getting lymphoedema. Your GP, or sarcoma clinical nurse specialist can give you advice on how to maintain a balanced and healthy diet. 

Exercise is good for the lymphatic system. It encourages movement of the lymph fluid and reduces the risk of the fluid building up under the skin.