Lymphoedema and Fibrosis

This month we heard from physiotherapist Megan Howard, Peter Mac’s resident lymphoedema and fibrosis specialist. Many of us have heard from Megan before and save up our questions for her visits!

She told us that lymphoedema is the "abnormal accumulation of protein-rich fluid in the interstitium” which in plain language is too much fluid in the space between cells within our tissues. This causes swelling. Causes of lymphoedema include cancer treatment such as radiotherapy or surgery, but also infection and trauma. While normally fluid between cells is returned to the blood stream via the lymphatic system, treatment for cancer can damage the lymphatic drainage system. And unfortunately this sort of fluid can itself cause chronic inflammation which, over time, can cause fibrosis and deposition of adipose (fat) tissue. 

There are many levels of lymphoedema, from severe to sub clinical - you may not even know you have it! - and sub clinical lymphoedema may exist for months or years before it becomes evident. Lymphoedema can be either internal (within the oral cavity, pharynx or larynx,) or external, or a combination of both. It’s under recognised and under treated.

Fibrosis on the other hand, is an abnormal and excessive formation of fibrous connective tissue leading to healthy tissue becoming thick and stiff. It is also a common side effect of radiotherapy treatment. It can develop months or years after treatment presenting as a delayed, dysfunctional healing response to radiation damage. Complicating matters, there is an interplay between fibrosis and lymphedema - one can lead to the other.

Treatment for lymphoedema can include skin care and scar management (moisturise moisturise moisturise!), exercise, manual lymphatic drainage and compression therapy. 

Management for fibrosis includes scar massage (different to lymphatic drainage), compression, mobiderm, laser and taping. While public services for lymphoedema are unfortunately limited, manual manipulation can be done at home using such tools as small paint rollers, stone rollers or gua sha stones. However, check with a physio trained in lymphoedema management for the correct techniques! Gentle stretching can also be extremely useful for those with fibrosis.

Before Megan arrived there was also a number of useful discussions, including whether treatment can contribute to sleep apnoea? It’s a very small sample size but a couple of members did report that their sleep issues or sleep apnoea had worsened and for one of us this was corroborated via a before and after sleep study. This stimulated a discussion about the many - sometimes seemingly unrelated - health issues that can occur in the years post treatment. Radiotherapy: the gift that keeps on giving…This led to a lengthy discussion about living with the fear of recurrence and the dreaded ‘scanxiety’. Heartfelt messages of understanding and solidarity were shared within the group. 

See you all next month.