Living with Lymphoedema following Head & Neck Cancers

I found Head and Neck lymphoedema (secondary lymphoedema) one of the most difficult lymphoedema's to write about.  Cancers to the head and neck are on average 3 - 5% of all cancers but imagine my surprise to learn that 90% of all patients treated for head and neck cancers will 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.

Professor Christopher Nutting talks in a series of 13 videos, with transcripts about head and neck cancers and explains that there are around 12,000 head and neck cancers diagnosed in the UK every year. 

 

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. 

Head and neck lymphoedema, develop 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. 

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

Treatment for lymphoedema should be part of a multi-disciplinary 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 which allows you to discuss treatment options, risk reducing activities and access to lymphoedema services.

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

How to recognise

Signs & Symptoms

  • Visible Swelling

  • Deepened skin folds

  • Indentations from clothing

  • Difficulty with head & neck movements

  • Speech difficulties

  • Difficulty in swallowing

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.

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:

  • 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

Facial Exercises 

A reminder that 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.

Management Strategies for Head and Neck Lymphoedema

Education - understanding why the swelling has developed.

Skincare - essential for everyday life including lymphoedema.

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

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

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

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.

Compression - head and neck lymphoedema is a difficult area to apply and tolerate compression which is made specifically for the individual.

Head and Neck Management