Primary lymphoedema can be a result of an underdeveloped lymphatic system at birth, although this may not be diagnosed until later in life. More commonly, secondary lymphoedema is a result of surgical or other types of cancer treatment. Although it’s a long-term condition, if diagnosed and treated early, the symptoms can be effectively managed. 

Here, Tamara Kosevic, Lymphoedema Lead Clinical Specialist and Physiotherapist at The Princess Grace Hospital, part of HCA Healthcare UK and founder and chair of the charity Lymphoedema International Health and Development (LIHDA), explains why breast cancer patients are at risk of developing secondary lymphoedema, the signs and symptoms you should be looking out for and what you can do to manage this long-term condition. 

What is secondary lymphoedema and how is it caused?

Lymphoedema is caused when your lymphatic drainage system is unable to function properly. This fault can either occur due to the lymphatic system not developing properly from birth (primary) or can develop following lymph node removal as part of breast cancer surgery (secondary).

If you have undergone treatment for breast cancer where lymph nodes are affected, there is a risk that you might develop lymphoedema. This is because in some cases, the removal or impact on the lymph nodes through surgery or radiotherapy can lead to the build-up of fluid in parts of the body, which in turn can cause lymphoedema. 

Lymphoedema is thought to affect around 2 in 10 people diagnosed with breast cancer. The number of lymph nodes removed or impacted play no part in determining how likely you are to be diagnosed with lymphoedema, it depends instead on your individual lymphatic system.

What are the signs and symptoms of lymphoedema?

Signs and symptoms of lymphoedema can occur at any point after breast cancer treatment; this could be within weeks of treatment or years later, so it’s important you remain mindful of symptoms.

Early symptoms of lymphoedema include:

• Limb swelling
• Heaviness of limbs
• Reduced function and mobility
• Skin changes – skin can become shiny
• Distortion of the affected part of the body
• Pain or infection in the affected area

It's important that if you notice any of the above signs or symptoms, that you speak to your breast care nurse, who can then refer you to a lymphoedema practitioner.

How can you minimise your risk of lymphoedema?

The best thing that you can do to minimise your risk of lymphoedema, even before undergoing cancer treatment, is to ensure that your BMI is in the healthy category - or as close to it as possible. This is because fat tissues require more blood vessels to bring it oxygen and nutrients. As a result, these areas of the body have more fluid to drain. If your lymphatic system can’t handle the amount of fluid, it can cause lymphoedema.

If you maintain a healthy lifestyle, which includes eating healthily and exercising regularly, both before and after treatment, then you can minimise your risk. It's important that these changes are long-term as lymphoedema can occur at any point after treatment.

How is lymphoedema treated?

There are various things that you and your healthcare team can do to manage and treat lymphoedema, as well as easing symptoms.

This includes:

Practising good skin care

Lymphoedema can make your skin dry and itchy, which means that cracks and breaks in the skin are more likely to occur, which increases the risk of infection. You can help keep your skin in good condition by moisturising every day, keeping your skin clean and carefully drying the affected area after washing. 

Having professionally fitted compression garments

Compression can help reduce and control lymphoedema as it can limit fluid build-up and help the fluid to move to an area that is draining well. It's important that your garments are fitted by a lymphoedema practitioner, as the garment you have will depend on how much swelling you have, and which part of the body is affected. 

Exercising regularly 

Exercise can help manage lymphoedema, as working your muscles increases the flow of lymph fluid and helps to move it away from the swollen area. It can also keep your joints flexible and can help maintain a healthy weight – two things which are very important if you have lymphoedema. Your lymphoedema practitioner will be able to explain which exercises are best for you, and how often you should be doing them. 

Having regular lymphatic drainage 

Lymphatic drainage is a specialised type of medical massage and can be used as part of your lymphoedema treatment. The aim is to encourage the lymph fluid to move away from the swollen area, so that it’s able to drain normally. It also helps lymph fluid drain through the healthy lymph vessels, which controls swelling. 

There are two types of lymphatic drainage – manual lymphatic drainage and simple lymphatic drainage. It’s important that you only receive manual lymphatic drainage from a trained lymphatic practitioner, and often manual lymphatic drainage will be given to you on average every two years.

Lymphoedema taping

Another way of managing lymphoedema is through taping – where tape which is made of elastic cotton material is stretched and stuck onto your skin to gently lift the top layer of skin. This allows the lymph fluid closest to the surface of the skin to flow more easily. 

The importance of self-management

Lymphoedema is a long-term condition. Maintaining symptom management over time can be difficult and it’s completely normal for you not to always be able to keep up with all of the advice that your lymphoedema practitioner gives you all of the time. However, it’s incredibly important that you do maintain a consistently healthy lifestyle as this can have the biggest impact on symptoms. 

If you would like more information on the care we offer through the diagnosis, treatment and support for breast cancer, visit our breast cancer hub.