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Living with Lymphoedema following Head & Neck Cancer

 

Of all the types of lymphoedema I've written about, I’ve found head and neck lymphoedema, which is classed as secondary lymphoedema, especially challenging. Its complexity, visibility, and emotional impact make it one of the hardest to capture with both accuracy and empathy. 

 

According to Lymph Facts from the British Lymphology Society, head and neck cancers make up only 3 to 5% of all cancer cases. Imagine my surprise to learn that 90% of patients treated for these cancers experience some degree of lymphoedema.

 

That is an exceptionally high figure. At the time of writing, I do not have an answer as to why being diagnosed with lymphoedema after head and neck cancer treatment is higher than being diagnosed with lymphoedema from other cancers.

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​Research undertaken by Northwest Cancer Research shows:

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"Across the UK, around 12,000 people are diagnosed with head and neck cancer each year, making it the eighth most common cancer in this country. It is more common in males than females and those living in some of the most deprived areas.

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Over the last decade, head and neck cancer rates have increased by a quarter."

 

Treatment for these cancers may combine surgery, radiotherapy, chemotherapy, or cancer medication. The surgery and radiotherapy treatment to the lymph node areas can increase the risk of lymphoedema and scar tissue. These treatments are likely to disrupt the lymph function. The swelling can develop both externally and internally. Externally the swelling will be visible in the soft tissues of the face, mouth, and neck. Internally the swelling may develop in the oral cavity, tongue, throat, and airway. 

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Head and neck lymphoedema develops when the body is unable to transport fluid to the damaged lymphatic system because scarring from the surgery blocks lymphatic vessels in the neck or the radiotherapy treatment to the neck has damaged the lymphatic system. 

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Healthcare providers tend to concentrate on the treatment of the cancer, and very often the side effects, like lymphoedema, become secondary. This will also depend on where you live in the UK and which services are available and whether your lymphoedema has been recognised, assessed, and diagnosed properly.

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Treatment for lymphoedema should be part of a multidisciplinary approach, which, in the case of head and neck lymphoedema, may include speech and language therapists. The UK is developing a cancer prehabilitation package of care for after diagnosis but before cancer treatment starts. As a patient, you are entitled to be consulted on every aspect of your care and a person-centred approach that allows you to discuss treatment options, risk-reducing activities, and access to lymphoedema services.

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You can read more about the side effects of radiotherapy treatment in head and neck cancers here...

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How to recognise

Signs & Symptoms

  • Visible swelling

  • Airway obstruction

  • Difficulty in swallowing (Dysphagia)

  • Facial and Neck Disfigurement

  • Deepened skin folds

  • Speech difficulties

  • Difficulty with head & neck movements, limited mobility

  • Eye problems

  • Skin infections leading to cellulitis

  • Psychological and emotional side effects

Head & Neck Cancer may cause a huge amount of stress, it can affect body-image, hearing, quality of life, self-esteem and may affect vision.

Life-long Selfcare

Priorities include:

  • Skincare, daily washing & moisturising

  • Shaving with an electric razor and it is important for men to continue with normal shaving habits

  • Antiseptic treatment of cuts or scratches to the skin

  • Mouth and dental care

  • Nutritional care

  • Protect face & neck from sunburn

  • Do not wear restrictive clothing around the neck

  • Lymph drainage

Impact

The impact of head and neck lymphoedema has a serious impact on both physical and mental health. 

 

The physical side effects may include facial disfigurement due to the increased swelling and this can have a devastating effect on self-esteem. 

 

Breathing, hearing, speaking, swallowing and vision may all be affected.  A person with head and neck lymphoedema may also experience a loss of identity.

Exercise and Positioning in Head and Neck Lymphoedema

 

Careful positioning when resting, sitting up, or lying down for lymphoedema in an arm, leg, or the head and neck helps the lymph fluid drain away and reduce swelling.

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With head and neck swelling while lying down or in bed sleeping, the aim is to help the lymph fluid drain; you do this by raising your head and upper body. You need to try and keep your head in line with your body, make sure your head is not bent, and make yourself as comfortable as you can. You can do this by using:

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  • Two to three pillows 

  • Using a foam wedge under your upper body and head

  • Raising the head of the bed slightly, by using blocks under the legs of the bed

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Facial Exercises 

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A gentle reminder: the lymphatic system does not have its own pump, and therefore we need exercise to increase lymph flow, which will help to reduce swelling. Simple facial exercises like frowning, smiling, and yawning can all make a significant difference.

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Image shows how you can exercise the face when you have been diagnosed with head and neck lymphoedem

Management Strategies for Head and Neck Lymphoedema

Education—understanding why the swelling has developed.

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Skincare is essential for everyday life, including lymphoedema.

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Stretching and movement stimulate lymph drainage, reduce stiffness, and soften fibrous tissue.

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Kinesiology tape—applied to stretched skin by a trained therapist in the area of swelling, will initiate pressure under the skin to promote lymph drainage. 

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Simple Lymphatic Drainage (SLD) is gentle, repetitive hand movements without creams; ask your therapist or physio to teach you. This will form part of your daily skincare routine.

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Manual Lymphatic Drainage (MLD) aims to reduce swelling away from congested areas; the hand movements increase lymph flow within normal lymphatics and bypass ineffective lymph vessels. MLD should always be carried out by a qualified MLD therapist.

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Compression—Head and neck lymphoedema is a difficult area to apply and tolerate compression, which is made specifically for the individual.

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Deep Oscillation—a non-invasive treatment that penetrates deep tissue layers, benefiting patients, especially those recovering from head and neck cancer.​​

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The Britih Lymphology Society have listed seven management stratergies for head and neck lymphoedema after treatment. Left side of image shows importance of Education, Skincare, Stretching and movement. Rigt side of image shows, Kinesiology taping, SelfRight side of image kinesiolgy taping, self lymphatic drainage, manual lymphatic drainage, compression.

You can read The British Lymphology Lymph Facts here...

Compression for Head and Neck Lymphoedema

 

Why It Matters and How It Works

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Head and neck lymphoedema is a complex and often distressing condition, particularly for those recovering from cancer treatment or surgery in this region. Swelling can affect not only physical comfort but also appearance, speech, swallowing, and emotional well-being. Compression therapy, when used appropriately, can play a vital role in managing symptoms and improving quality of life.

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Why Compression Is Important

 

Compression helps to:

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  • Reduce swelling by encouraging lymph fluid to move away from congested areas.

  • Prevent fluid buildup after manual lymphatic drainage or exercise.

  • Support tissue health, reducing the risk of fibrosis and skin changes.

  • Improve comfort and function, easing tightness and promoting mobility in the neck, jaw, and facial muscles.

  • Enhance emotional well-being by helping individuals feel more in control of their appearance and treatment.

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How Compression Works

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Unlike the circulatory system, the lymphatic system has no central pump. It relies on muscle movement and external pressure to move lymph fluid. Compression garments or bandages:

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  • Apply gentle, even pressure to the affected area.

  • Act as a counterforce to muscle movement, helping fluid drain through lymph vessels.

  • Are often used after massage or exercise to maintain fluid reduction.

  • Must be carefully fitted by a trained lymphoedema specialist to ensure safety and effectiveness.

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Types of Compression for Head and Neck

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Compression for this region is more complex than for limbs and may include:

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  • Custom-made garments such as chin straps, facial masks, or neck collars.

  • Adjustable wraps with Velcro for ease of use.

  • Soft bandaging techniques, often used in clinical settings.

  • Innovative materials designed to contour the face without restricting breathing or movement.

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Considerations and Care

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  • Compression should never cause pain, numbness, or skin changes. If it does, it must be removed and reassessed.

  • Garments should be worn during the day and removed at night unless advised otherwise.

  • Regular skin care and monitoring are essential to prevent infection and maintain skin integrity

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Deep Oscillation treatment for Head and Neck Cancer

 

At L-W-O Community, we are committed to empowering individuals living with lymphoedema, not only to improve their physical well-being but also to take an active role in managing their treatment. Among our members, those affected by head and neck lymphoedema often face particularly complex challenges. This form of lymphoedema is notoriously difficult to treat and can have a profound impact on mental and emotional health.

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Over the past several years, I’ve had the privilege of working with Mary Fickling of PhysioPod UK Ltd, observing the growing use of deep oscillation therapy across both medical and sports treatment settings. Backed by evidence-based research, this innovative approach is gaining recognition for its potential to support lymphatic health and treatment to enhance quality of life.

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Main Focus: Head and Neck Lymphoedema (HNL) Post-Cancer Treatment

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  • Prevalence: Up to 90% of patients treated for head and neck cancers develop secondary lymphoedema.

  • Impact: Affects speech, swallowing, appearance, mobility, and emotional well-being.

  • Urgency: Early identification and referral to specialist services are critical for better outcomes.

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Deep Oscillation Therapy (DOT)

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  • Technology: Non-invasive, electrostatic therapy that penetrates deep tissue layers.

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  • Benefits:

    • Reduces swelling, fibrosis, and pain

    • Improves mobility, speech, swallowing, and skin health

    • Enhances quality of life and emotional resilience

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  • Adoption: Used in NHS clinics and by private practitioners; many patients invest in personal units.

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 Multidisciplinary Care

  • Best practice includes:

    • Lymphoedema specialists

    • Physiotherapy

    • Speech and language therapy

    • Occupational therapy

    • Psychological support

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Case Studies & Testimonials

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  • Corinne’s Story: DOT transformed her recovery, restoring movement and speech.

  • Mr A’s Case: Regained facial animation and speech; cellulitis resolved.

  • David McConnachie: Post-throat cancer, DOT helped manage lifelong lymphoedema.

  • Multiple Patient Voices: Consistent praise for DOT’s relaxing, visible, and functional benefits.

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Research & Clinical Insights

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  • Practitioner Feedback: DOT enhances Manual Lymphatic Drainage (MLD), especially in fibrotic cases.

  • Scar Management: DOT used alongside specialised techniques to mobilise scar tissue.

  • Epidemiology: Head and neck cancer rates rising; more survivors require lymphoedema care.

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 Call to Action

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  • Survey Launch: Aimed at patients and healthcare professionals to evaluate DOT’s impact.

  • Upcoming Events: PhysioPod® to exhibit at LSN AGM, National Army Museum, 17th Sept 2025.

  • Further Info: Contact details and links for practitioners and patients interested in DOT.

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Page first published 2021

Last updated August 2025

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