Lymphoedema is the accumulation of excessive amounts of fluid resulting in swelling of one or more regions of the body. Secondary lymphoedema arises because the lymphatic system has been damaged in some way. It is the most common type of lymphoedema.
Cancer Australia conducted a review of research on evidence related to secondary lymphoedema and found that breast cancer surgery appears to be the most common cause of upper-limb secondary lymphoedema in Australia.
Early detection is the key to success in managing lymphoedema well. It is important to seek help early if you notice symptoms. Whilst it can’t be cured, the swelling and symptoms of moderate lymphoedema can be reduced and managed well with the right help.
“In my experience the possibility of lymphoedema was incorporated into pre-operative consultations with the breast clinic team. As soon as my diagnosis was confirmed I was told about it by the doctor and then briefed in more detail by the breast care nurse. At my pre-op clinic the physios were there and took measurements, gave me exercise sheets and went through the exercises with me. Check-ups were incorporated into my post-operative breast clinic appointments. It was made known to me that I could contact the Lymphoedema Clinic at any time outside my regular check-ups if I had problems or queries. The practitioners made it clear that many things were not really known, but also that their program was based on the evidence that was known. With the treatment I received I feel that lymphoedema WAS acknowledged”. (Vivien – Counterpart service user, 2013)
Not all treatment teams are the same when it comes to minimising your risk of developing lymphoedema before and after surgery. It is important to be armed with information and to feel that you are able to talk about your concerns. There are resources in this Navigator that can prepare you to do this.
The purpose of this Navigator is to guide you to information about secondary lymphoedema following surgery for early breast cancer. It does not constitute an endorsement of the information contained in the resources by Counterpart. This information is not meant to be a replacement for consultations with and recommendations from your treating team, but rather to provide a starting point to information seeking. If you are unsure about anything, you should always consult your medical team.