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More than 70,000 Australians are affected by lymphoedema, which is often linked to cancer treatment.
It is a potentially debilitating condition, but a new book aims to empower patients with the latest insights on prevention, diagnosis and management.
Breast cancer specialist and radiation oncologist Professor John Boyages wrote 'Lymphoedema: Taking Control' to explain the condition in simple terms and advise how to deal with it in everyday life.
"All my books I write with the patient in mind and that can be a challenge, as some patients want the absolute basic level of information, and some want a lot of detail," said Prof Boyages, who consults and treats at three Icon Cancer Centres in New South Wales, primarily the Wahroonga clinic at Sydney Adventist Hospital.
"But everything is underpinned by research, it's all peer reviewed and I'm grateful to have connections around the world who have read the book and contributed to it as well."
Lymphoedema is a chronic condition that occurs when the lymphatic system is damaged or impaired, leading to fluid accumulation and swelling, most commonly in the arms or legs.
It can develop after cancer treatment, particularly after surgery or radiation affecting the lymph nodes.
Prof Boyages said in some cases patients found the lymphoedema diagnosis harder to deal with than their cancer treatment.
"We see this all the time, the patient has been through chemo, or radiation, or a mastectomy, they've lost their hair, and then this – they feel labelled, there's stigma, they feel shame, wearing the compression garments people ask them all the time, 'What happened?'," he said.
"We've seen impacts on socialisation, and relationships, people don't want to go out.
"It's very distressing and part of the aim of the book is to empower patients and give them hope."
The book contains a number of patient stories, including Jayne, a registered nurse diagnosed with breast cancer in 1991. She underwent surgery, chemotherapy and radiotherapy and managed for years after this treatment without significant side-effects.
Then, in 2016, Jayne's arm suddenly swelled up while on holiday in England, and the swelling did not go away.
"Simple tasks became incredibly difficult – turning over in bed, finding clothes that fit, even carrying out daily routines felt cumbersome," she said.
Seeking help upon her return to Australia, Jayne was referred to the Australian Lymphoedema Education, Research and Treatment (ALERT) Centre at Macquarie University – where Prof Boyages works with its Program Director, his longtime colleague Associate Professor Louise Koelmeyer.
Diagnosed with advanced lymphoedema, she underwent thorough imaging and tests and received life-changing liposuction on her arm in 2017.
"The team at ALERT gave me my life back. I feel confident, capable, and proud to compete in the sports I love – hockey, swimming, and golf," she said.
Jayne's recovery went smoothly and, just five weeks later, she won a gold medal for hockey at the Australian Masters Games.
Prof Boyages, who was awarded an Order of Australia (AM) in 2017, was instrumental in introducing liposuction to the country as a treatment for lymphoedema.
"When liposuction was first suggested to me as a treatment, I was very sceptical," he said. "But it's had amazing results, and we have seen how it has improved quality of life.
"The problem however is that private health funds only recognise liposuction as a cosmetic procedure, so there's a lot of out-of-pocket expenses."
Prof Boyages said early detection was vital to treating lymphoedema, and he would like to see greater awareness of the condition.
"Ensuring patients have access to compression garments – which can be expensive – and access to advance imaging is important," he said.
"Also helping patients have access to surgery, whether that's liposuction or microsurgery, and of course, funding for research and medication. We hope that one day there will be a drug to help treat this condition."
Read more: Early diagnosis for breast cancer complication
Read more: Macquarie University Hospital awards 'Father of liposuction for lymphoedema'
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