The Problem: Cancer Treatment-Related Lymphoedema (CTRL) is a chronic condition and known side-effect of cancer treatments. Unmanaged CTRL leads to pain, immobility, skin infections, and disfigurement. CTRL can also be a barrier to returning to work and negatively impacts well-being. Care is costly and largely unsubsidised.
Gaps in clinical training and the lack of assessment guidelines mean CTRL is under-recognised and underdiagnosed. Patients regularly report a lack of information or misinformation from health providers at all levels and stages of their cancer journey. CTRL is not currently captured in Australian Health statistics or adequately addressed in National Cancer Plans, meaning Optimal Care Pathways for CTRL do not exist.
Access to and the appropriate use of compression garments is critical in managing CTRL. While all jurisdictions now have lymphoedema compression garment scheme in place, they vary in eligibility and content and referral pathways to available clinics are unclear. Funding for CTRL is ad hoc.
Despite current research indicating early diagnosis and intervention would lead to better patient health outcomes, hesitancy by some cancer specialists to accept this is an additional barrier.
My Mission: The journey of 1000 miles starts with a single step’, and like many cancer survivors, I wanted to use my professional skills to give back. I assessed CTRL as a neglected Cancer Survivorship issue, so without a roadmap, I naively took my first step on the ‘Lymphoedema Advocacy Highway’.
A decade on, advancements in CTRL recognition and care are evident, but shifting the ‘culture’ dial surrounding CTRL so as to gain consensus on guidelines continues to be a challenge. I will reflect on a decade of CTRL Advocacy, highlight the steps I took, discuss how I developed the role and outline where I plan to go from here.