Life with Lymphoedema

For some people, thinking they may have lymphoedema or receiving the diagnosis of lymphoedema can be shattering.

Others may have lived with the swelling for years without getting treatment.

Some people worry that the swelling means that the cancer is returning and the swelling may be a constant reminder of the experience of cancer.

For others with primary lymphoedema, just getting a diagnosis may have taken years. In the past “... much of the difficulty adjusting to lymphoedema can be attributed to what one study called ‘abandonment by medicine’. Lack of knowledge and concern by the medical professionals, lack of pre- treatment counseling and effective management … physicians adopt a wait and see approach.” (Davis, 1998, p.48).

However the awareness and understanding of lymphoedema by health professionals is growing. Once you receive a diagnosis of lymphoedema you may feel that life is never the same again. You may find that lymphoedema makes you feel angry, anxious or depressed. Be assured there is help available, and there is a lot you can do for yourself.

Early detection and treatment increase the chance of recovery or of keeping the problem manageable.

The challenge for the person with lymphoedema is to take charge of the situation and if possible find a good lymphoedema therapist (see Fact Sheet – Where do I go for help to manage lymphoedema?).

Lymphoedema can often be a life changing experience and calls upon you and your partner/family/ support system to be adaptable.

Some issues will worry you more than others. You may find that you need to do things differently, such as the need to:

adapt clothing to accommodate the swelling or the compression garments
get used to wearing compression garments
pay extra costs - paying for compression garments and massage
change the way you do household tasks or work
work out ways to fit in time for exercise and massage
learn to take extra special care with your limb and treat cuts and burns promptly.

The list of precautions may seem endless. It is worth taking the time to set things up so that you can prevent injury and nip problems in the bud. See the list for the survival kit on the Risk Factors and Triggers page.

You may find it helpful ...

to join the Lymphoedema Support Network, attend meetings or get the newsletters – your local Cancer Society will have contact information
read up about what you can do for yourself.

A study into the effects of lymphoedema (Hare, 2000) found that important issues were finding information, making lifestyle changes, coping with loss and anxiety and also counting the blessings of support from family and friends.

After the period of adjustment you can resume your life and continue to live life to the full.

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