Lymphoedema – a hidden side effect of cancer treatment

“My everyday life is affected 24 hours a day, seven days a week, 365 days a year. There is never a moment when any decision I make isn’t governed by my leg.”
Helga, on living with lymphoedema.

Almost five years ago, as an advocacy volunteer with Cancer Council NSW, I attended a dinner meeting of the Northern Suburbs Cancer Action Network, which was then a new local cancer advocacy network. I met a woman who talked to me about her lymphoedema, which had developed as a result of treatment for her cancer. It was a warm evening and I couldn’t help but think what a burden this chronic disease would be, especially in summer when the compression garment that contained the swelling in her arm would be especially hot and uncomfortable.

The Northern Suburbs CAN went on to advocate for better local lymphoedema services. In 2013 they worked with the Lymphoedema Support Group NSW to publish an ‘eye-opening’ book, Lymphoedema Stories: the untold truth, about the impact that lymphoedema can have across all aspects of people’s lives.

In the meantime, I started working at Cancer Council NSW on the Policy and Advocacy team, and became aware that improvements to lymphoedema services are actually needed all across NSW, and indeed all around Australia. I also became aware of how little community awareness there is of this condition. It seemed like an invisible disease.

That’s why it was wonderful that in 2014 Cancer Council NSW became a founding member of the Lymphoedema Action Alliance, and now works with 18 other organisations across Australia to reduce the unnecessary suffering of people who have lymphoedema.

Carolyn Grenville
Policy and Advocacy team, Cancer Council NSW

What is Lymphoedema?

Lymphoedema is a chronic condition that causes swelling, often in arms and legs. Mostly this is in response to surgery, for example, removing lymph nodes as part of cancer treatment, but there are other causes too. If the swelling is not treated by a trained lymphoedema therapist, the swelling stays, leading to skin deterioration, disfigurement, limited mobility and infections. In NSW it is estimated that almost 10,000 people are affected with lymphoedema. (Reference: Australian Bureau of Statistics. 3101.0 – Australian Demographic Statistics Dec, 2013. June 2014)

This results in lifelong disability, reduced work capability, social isolation and increased hospital admissions for sufferers. For NSW Health it means hospital beds are being occupied for a preventable condition because there are not enough trained full-time lymphoedema therapist positions.

The solution

• We need the NSW Government to fund at least 62.5 full time lymphoedema therapists across NSW. (It is estimated that we currently have less than a quarter of these required positions – find more detail in our Lymphoedema briefing paper.
• We also need detailed information about public lymphoedema services to be available online, so that people can find out about services in their local area.

What is the Lymphoedema Action Alliance?

Cancer Council NSW is a founding member of the Lymphoedema Action Alliance, a group of 19 organisations including YWCA NSW, Country Women’s Association NSW, Australian Lymphology Association, and Lymphoedema Support Group NSW, representing many thousands of people. The Lymphoedema Action Alliance is advocating to reduce the unnecessary suffering of people who have lymphoedema, by ensuring timely access to affordable treatment services and compression garments regardless of where people live, their financial circumstances and their health situation.

What can you do?

6 March is World Lymphoedema Day, and March is Lymphoedema Awareness Month. Will you join us to make a difference for people with lymphoedema?

• Contact your local MP to let them know we need the NSW Government to fund at least 62.5 full time lymphoedema therapists across NSW. Click here to find the Lymphoedema Action Alliance template letter and briefing paper.
• Like Lymphoedema Action Alliance on Facebook to support the campaign.

“It’s time that lymphoedema and its treatment is recognised by the government instead of the burden of care falling to patients.”
Helen Bonynge, person with lymphoedema.