RESEARCH NEWS
The common disease you may never have heard of
Lymphoedema is not likely a disease you are very familiar with – or perhaps even heard of. But with 300,000 Australians impacted by lymphoedema at any one time, it is a condition that could impact you or someone you care about in your lifetime.
The disease causes swelling in the limbs, often resulting in pain, heaviness or restricted movement. It is commonly triggered by the surgical removal of lymph nodes during cancer treatment, with one in five cancer patients who lose lymph nodes estimated to develop the condition.
For Macquarie University patient Alan, his lymphoedema journey began soon after his treatment for melanoma.
“I paid the price of growing up in the sunshine of Perth, in the era before the ‘slip, slop, slap’ awareness campaigns,” says Alan. “I had two melanomas removed from my right leg, ten years apart, but I was confident that things were under control with regular follow-up monitoring.”
That was until 2006, when Alan detected lumps in his groin which turned out to be a progression of his melanoma to the lymph nodes. The nodes were surgically removed and Alan’s subsequent radiation and immunotherapy treatments were successful. But the impact of a subsequent lymphoedema diagnosis made life difficult for Alan.
“Despite attempts to manage my lymphoedema with compression garments and lymphatic massage, it deteriorated to the point where I had significant permanent swelling and discomfort,” he recalls.
“I began to avoid vigorous exercise or long walks. My trousers were ill-fitting and I was reluctant to wear shorts or be seen at the beach. Driving or flying long distances was very uncomfortable. I was having difficulty keeling or crouching and I avoided stairs wherever possible.”
Not only did lymphoedema prevent Alan from living the active lifestyle to which he was accustomed, it also served as a constant reminder of his cancer, impacting his mental health. Eager to get his quality of life back, Alan turned to the Australian Lymphoedema Education, Research and Treatment (ALERT) program at Macquarie University in 2016.
“I was considered a suitable candidate for liposuction surgery and – under the care of Dr Lam at the Macquarie University Hospital – instantly lost five litres of accumulated fat and fluid,” says Alan. “With rehab and new compression garments, I was back on my feet and experiencing a big improvement in my condition.”
Alan commenced regular reviews with the expert ALERT team, who fine-tuned new compression garments for his slimmed-down limb and provided guidance on diet and exercise to keep his lymphoedema under control.
Despite a new cancer diagnosis in 2021, which required further surgery and immunotherapy, Alan says he is grateful to be leading a normal active life again.
“I am very happy to have been able to resume all my normal activities, including long bush walks, kayaking, swimming, travel and family activities,” Alan says. “My lymphoedema – the most significant side effect of my many encounters with melanoma – is under control and I am very grateful to the ALERT team for their excellent treatment and ongoing support over the years.”
You can help improve the lives of patients like Alan by supporting health and medical research at Macquarie University.