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Mon 07 Mar 2022

Lymphoedema Awareness Week #LAW2022

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’

Following your article, I requested the lower limb questionnaire.  Upon receipt and your accompanying message which read 'I do hope is of some help'.  My answer - it certainly has helped me.  I completed the questionnaire and took it along to my various appointments and I have been diagnosed with Genital Lymphoedema and I am now the proud owner of compression shorts which I am finding brilliant, fantastic, awesome and they have given me newfound confidence.

I knew my body was changing inside since my vulva cancer diagnosis, treatment and operation now eight years ago.  The radical radiotherapy (38 treatments) that I received has led to a significant amount of lymphoedema in my genital area and upper thighs.  However, eight years on I am well and adjust to body changes.  I am proactive in the management of my skin and have learnt a lot from doing my own research.

I am so very grateful for the article in LympLine and would encourage anyone to use those '20 seconds of courage'.

Life is but a journey and we must treasure each moment.

As well as supporting patients to self-report on lymphoedema symptoms, the teams’ work elsewhere has worked to identify education needs for health care professionals, helping to address gaps in understanding and confidence about this condition from both sides.

Dr Melanie Thomas, National Clinical Lead for Lymphoedema in Wales, who has been involved in most of the projects mentioned in this blog, said:

We are so thankful to Tenovus Cancer Care in pushing the lymphoedema research agenda forward in Wales. Tenovus is the only charity to have continually supported lymphoedema research over the last 5 years and we are eternally grateful in making a big difference in cancer patients lives.

We are so proud to have supported this important research, and to continue to provide a home for Lymphoedema Network Wales and our partner Health Boards to deliver their services via our Mobile Support Units.

If you or anyone you love suffers from lymphoedema, whether it is cancer related or otherwise, we hope that the resources in this blog have been useful for you. Please find additional links and information below.

Additional resources

If you or someone you love has been affected by cancer, our free cancer Support Line is there for you. Just call 0808 808 1010