Living with, or being at risk of, lymphoedema after breast cancer can leave many people feeling uncertain and overwhelmed. Too often, survivors must search for information on their own, sometimes too late, and without clear guidance on what matters most for their long-term health.
To help address this challenge, researchers from Flinders University have developed LeaN On (Lymphoedema Navigation Online), an evidence-based digital platform that supports breast cancer survivors across Australia who are living with or worried about lymphoedema.
LeaN On will first be tested as part of a research project to evaluate how best to deliver lymphoedema support online, including both nurse-supported and self-directed options.
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Lymphoedema is a chronic condition affecting the arms and hands and may appear weeks, months, or years after breast cancer treatment. Despite its impact, many people receive limited advice on early signs or how to reduce their risk.
Chief Investigator Professor Bogda Koczwara, originally from Flinders University and now Director of the Australian Research Centre for Cancer Survivorship, a partnership between Cancer Council NSW and UNSW Sydney, says the program addresses a longstanding gap in survivorship care.
“Many breast cancer survivors feel unprepared for the risk of lymphoedema and are unsure what to look for or how to act early to manage this risk,” says Professor Koczwara.
“LeaN On gives them a clear and supportive way to build the skills and confidence they need to manage their health over time. The online design means people can access guidance no matter where they live, which is especially important for rural and remote communities that face limited access to specialist care.”
Flinders University’s Professor Neil Piller, a lymphologist and Director of the Lymphoedema Clinical Research Unit and recent recipient of a Member of the Order of Australia for his significant service to lymphology, says the project will give fresh hope to cancer survivors.
“One of the benefits of LeaN On will be that participants at risk of and with lymphoedemas will get support for their condition and advice on future management strategies, and how to target best and sequence them,” says Professor Piller.
The LeaN On website guides users through a simple 12-step journey, with each step offering a small and manageable piece of information.
The content is designed to be easy to understand, practical, and relevant to everyday life. By the end of the journey, users will have a clearer understanding of what lymphoedema is, what signs to look out for, what actions they can take now, and when to seek professional support.
In partnership with the McGrath Foundation, McGrath Cancer Care Nurses specialising in breast care in South Australia and the Northern Territory will deliver and evaluate the nurse-led model of care.
Research Manager at McGrath Foundation, Dr Fiona Crawford-Williams, says, “With over 250 McGrath Cancer Care Nurses who specialise in supporting patients with breast care across Australia, an effective program for improving lymphoedema management like LeaN On will have wide-reaching benefits. By offering trusted, step-by-step clinical guidance that people can return to over time, our nurses are uniquely placed to help prevent complications of lymphoedema while improving long-term wellbeing for people who have experienced breast cancer.”
The program will also be accessible nationally through Breast Cancer Network Australia (BCNA), the leading national consumer breast cancer organisation. Offering both nurse-supported and self-directed options will allow the research team to compare how people engage with online tools across different care settings. As a project partner, BCNA will share LeaN On across its national network through established consumer engagement platforms.
BCNA Director of Policy, Advocacy and Support Services, Vicki Durston, says, “Our partnership with Flinders University on the LeaN On program is a powerful example of how we can bridge the gap between clinical research and the everyday needs of people diagnosed with breast cancer. By using our national network and consumer platforms, we will ensure this evidence-based tool reaches every Australian who needs it, regardless of postcode or access to specialist care. This collaboration highlights the impact of combining world-class research with the lived experience of our members to deliver practical, accessible solutions that help people manage their risk of lymphoedema from the very beginning.”
BCNA plays a critical role in embedding lived experience into research. Through this partnership, a Consumer Representative was appointed, and participation opportunities were promoted through BCNA’s engagement channels, ensuring the work is guided by those most affected and leads to practical, inclusive outcomes.
BCNA Consumer Representative, Deborah Lopert, says, “It has been a great privilege to contribute as a BCNA Consumer Representative on this project. The website and guided program will be an excellent resource for women concerned about lymphoedema, offering clear, reassuring guidance and a wealth of useful information.”
Source: Flinders University
