The end of 2022 brought the exciting new addition of head and neck lymphoedema (HNL) credentials to my skill set. I have been passionate about gaining these specialist skills since completing my initial lymphodema qualifications due to the enormous burden head and neck lymphoedema (HNL) places on individuals from a disease and psychological perspective. For this months blog, I want to share some information with you about head and neck lymphoedema so that we can increase awareness and make sure those who experience head and neck lymphoedema know that help is out there.
Based on the research literature, lymphoedema is estimated to affect between 54 and 98% of people with head and neck cancer and can appear internally and/or externally (Ridner et al, 2016; Jeans et al, 2022; Jeans et al, 2020). The occurrence of lymphoedema is directly related to how extensive the treatment for the cancer was i.e.. more extensive surgery, more lymph nodes removed, higher doses of radiation therapy and chemotherapy all increase the risk of lymphoedema. The good news is that the literature also reports that improvements can be made in tissues, swelling, range of motion and pain from HNL with complex lymphoedema therapy.
Let’s take a closer look…
What is head and neck lymphoedema (HNL)?
HNL is swelling that occurs in the head and neck region following damage to the lymphatics in this region. It occurs because the flow of lymph fluid is slower than the rate at which it is gathering in the tissues. This swelling can occur inside the mouth, throat and airways or on the outside of the head and neck.
The lymphatic system is a network of small vessels and organs that are responsible for taking lymph fluid (fluid that has leaked out into the tissues) back towards the heart as well as responsible for fighting any infections or “bugs” that may enter the body. The lymphatic system may be damaged by cancer itself or by surgery, radiation to the head and neck as well as chemotherapy which are used to fight the cancer. When the lymphatics are damaged the flow of lymph from the head and neck is slower which means that often fluid is gathering quicker than the lymphatics can take it away.
The common symptoms experienced with head and neck lymphoedema are:
- Puffiness, swelling, tightness or heaviness in the head and/or neck region.
- Difficulties with swallowing, speaking or breathing is common with swelling inside the head and neck
- Often swelling gets worse overnight and improves as the day progresses
- Changes in shape of face/ neck
- Changes in the thickness and texture of the skin over areas of swelling
- Reduced movement of neck, face, mouth and tongue
How long after cancer treatment does HNL develop?
Similar to lymphoedema in other areas of the body, HNL can develop quickly after cancer treatment or may develop years down the track.
If you have had surgery, radiation or chemotherapy for head and neck cancer you will likely be at risk of head and neck lymphoedema for the rest of your life, but this does not mean you will develop it.
Can HNL be cured?
Unfortunately there is no cure for lymphoedema. It is a chronic condition that will need to be managed long term. However, as mentioned above lymphoedema can be successfully managed so it is important to seek assistance to form a management plan to improve your quality of life and symptoms.
What can be done to improve HNL?
Similar to any lymphoedema, HNL is best treated and managed with complex lymphoedema therapy by a specially trained lymphoedema practitioner. Complex lymphoedema therapy for the head and neck is made up of the following treatments:
- Manual lymphatic drainage massage (MLD): MLD is a specialised form of massage that directs lymph fluid towards working lymphatics to speed up the clearance of lymph in areas that have been damaged. MLD can work wonders to improve the texture of skin as well as improve the movement of lymph out of the head and neck region.
- Compression: Compression therapy can assist to improve the speed of drainage as well as softening hardened areas of skin and make your massage more effective when used just prior to MLD. Compression can take many forms so it is important to explore options with your therapist to make sure you are using something that suits you.
- Soft tissue release and exercise: Scarring and tightness in muscles can be a common sie effect from head and neck cancer treatments. When this occurs it can effect how freely our lymph drains back towards the heart. Myofascial release is a type of technique that releases tightness in the tissues around the neck structures. This combined with exercises to stretch and strengthen the neck and facial muscles can improve lymph drainage in the head and neck.
- Skin care: keeping skin healthy is very important to prevent infections and further damage to the lymphatics. Lymphoedema therapists can assist with education and advice on cleansing and moisturising your skin to keep it in its best condition.
In addition to these treatments, low level laser therapy and kinesiology taping can assist to improve lymph movement and tissue texture.
Alternatively, the following is a list of useful links which can provide further information.
Australasian Lymphology Association – https://www.lymphoedema.org.au/about-lymphoedema/what-is-lymphoedema/
Until next time, be kind to yourself.
ALA accredited lymphoedema practitioner
Ridner SH, Dietrich MS, Niermann K, Cmelak A, Mannion K, Murphy B. A Prospective Study of the Lymphedema and Fibrosis Continuum in Patients with Head and Neck Cancer. Lymphat Res Biol. 2016 Dec;14(4):198-205. doi: 10.1089/lrb.2016.0001. Epub 2016 Jun 15. PMID: 27305456; PMCID: PMC5178009.
Jeans, C., Brown, B., Ward, E.C. et al. A Prospective, Longitudinal and Exploratory Study of Head and Neck Lymphoedema and Dysphagia Following Chemoradiotherapy for Head and Neck Cancer. Dysphagia (2022). https://doi.org/10.1007/s00455-022-10526-1
Jodie L. Nixon, Amanda E. Pigott, Bena Cartmill, Jane Turner, Jennifer Fleming, Sandro V. Porceddu (2018). A mixed methods examination of distress and person-centred experience of head and neck lymphoedema, Oral Oncology, Volume 83, 2018, Pages 18-24, ISSN 1368-8375, https://doi.org/10.1016/j.oraloncology.2018.05.025.
Jeans C, Brown B, Ward EC, Vertigan AE, Pigott AE, Nixon JL, Wratten C. Comparing the prevalence, location, and severity of head and neck lymphedema after postoperative radiotherapy for oral cavity cancers and definitive chemoradiotherapy for oropharyngeal, laryngeal, and hypopharyngeal cancers. Head Neck. 2020 Nov;42(11):3364-3374. doi: 10.1002/hed.26394. Epub 2020 Jul 31. PMID: 32735033.