As anyone who has been affected by cancer knows, a diagnosis can lead to all kinds of physical, practical and psychological changes which may not be directly related to the cancer itself. One of these potential impacts is lymphoedema; a condition which can be a side-effect of cancer treatment, in particular breast cancer, which means the body’s drainage system doesn’t work properly. It can lead to severe swelling in the arms, legs, feet and other parts of the body which can cause mobility problems and chronic pain. It needs lifelong management.
There are over 10,000 people in Wales living with lymphoedema and the number is rising. It affects people physically and emotionally, and can impact every part of daily life. It can be distressing, affect someone’s confidence and make it incredibly difficult to get about.
Here at Tenovus Cancer Care, we recognise just how important lymphoedema diagnosis, care and research is; as well as providing treatment for lymphoedema closer to home in our Mobile Support Units, we have supported five iGrants focussed on Lymphoedema, and you can read more about these projects and some of their key outputs by following the links within and at the end of this blog.
These projects have had numerous impacts, both academically and in terms of lymphoedema diagnosis and care. One of the outputs from a project led by Dr Melanie Thomas, National Clinical Lead for Lymphoedema in Wales, was the creation of a self-report questionnaire for patients with genital oedema, which has helped support both patients and medical professionals to confidently diagnose and address this condition. The Lower Limb and Genital Lymphoedema Questionnaire (LLGLQ) is being used around the world, but was developed right here in Wales, as a result of this Tenovus Cancer Care funded research project.
One patient recently got in touch with co-author and researcher Dr Rhian Noble-Jones to thank her for the assessment tool, which she requested after reading an article called ‘20 seconds of courage: talking about genital oedema in adults’