Living with lymphoedema

Lymphoedema is swelling caused by a build-up of lymph fluid in the surface tissues of the body.

Following treatment for breast cancer this lymph fluid build-up may occur as a result of damage to the lymphatic system because of surgery and/or radiotherapy to the lymph nodes under the arm (axilla) and surrounding area. Sometimes it can be due to cancer cells in the lymph system.

On an emotional level, you may feel that lymphoedema is harder to come to terms with than the cancer treatment itself. You may experience a mixture of feelings depending upon the degree of swelling and how it affects your daily life but it is normal to feel angry or fed up at times.

You can manage these feelings by trying to understand why they have developed and taking positive steps such as relaxation to help you cope with them.

If there are times when you feel that you are not coping very well, don't be afraid to ask for help, either from your lymphoedema specialist or breast care nurse. You may find it helpful to talk to other people who are also living with the condition.

Some people feel that lymphoedema affects their self-confidence because favourite hobbies or activities have to be reconsidered. This can have an impact on social or personal relationships. Talk to your lymphoedema specialist about how you can modify your activities rather than stop them altogether.

Sometimes the swelling cannot be hidden away easily (particularly during the summer months) and may therefore be a constant reminder of your breast cancer diagnosis. You may find that some people close to you cannot appreciate that an apparently ‘harmless’ symptom like swelling can cause you so much distress.

Managing your lymphoedema may mean that you need to make some adjustments to your lifestyle, but with appropriate treatment the symptoms can be reduced, helping to minimise the effect on your daily life.