Lymphedema

 

“Compression sleeves are an essential part of management to avoid it moving up the stages”

 

Lymphoedema is a side effect of breast cancer treatment. It is the build-up of lymphatic fluid which is no longer able to drain properly due to the lymphatic system being damaged during surgery or radiotherapy. Once it has developed it is a life-long condition but the earlier it is identified, the better it can be managed. Sadly, awareness and treatment appear to be a bit of a postcode lottery.

 

    Many of our ladies suffer with this in varying stages, with some developing it straight after surgery and others have seen it occur years after active treatment has finished. Although it is most commonly seen as swelling in our arms, it can also affect our breast and trunk area. The fluid is best dispersed by wearing compression garments and specialist massage. Swimming is also a great exercise to keep the swelling under control.

 

    Some told of experiencing cellulitis, which is particularly dangerous if not treated effectively as it can easily lead to sepsis. NHS-issue compression garments are quite unsightly, especially if you have to wear the sleeves during the daytime, although it was mentioned they are now produced in different colours and patterns, which is an improvement!

 

    The general view of our discussion participants was that there is not enough awareness or emphasis on lymphoedema before surgery and not enough support once diagnosed. Treatment of the cancer takes priority over any meaningful thought of our future lives. Although we are grateful for receiving cancer treatment, it can damage our bodies permanently in so many ways, and we should be made completely aware of those issues right from the start. More research is needed to understand the exact triggers that lead to lymphoedema as, at the moment, we are all given the same basic advice, yet only some of us go on to develop the condition.

 

    Many breast cancer survivors don’t get to sail off into the sunset, happy and cured. There is an extensive list of side effects and things that can go wrong once active treatment has finished. Serious issues that we need ongoing support with, in order to live a full and active life, on top dealing with possible recurrence or a secondary diagnosis. How can we become resilient and self-reliant if we aren’t given crucial information about our own bodies?