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  • Managing the side effects of treatment for head and neck cancers

    Contents

    It will take some time to recover from the physical and emotional changes caused by treatment for a head and neck cancer. Side effects can be temporary or permanent, and some will require ongoing management and rehabilitation.

    This page provides information and tips to help you manage common side effects, including changes to eating, speech, breathing, appearance, sexuality and vision, ongoing pain and lymphoedema. If you experience any of these problems, talk to your doctor, speech pathologist or dietitian. For more support, information and referral to services, call Cancer Council 13 11 20.

    Mouth problems

    Mouth sores and ulcers 

    Mouth sores and ulcers are a common side effect of chemotherapy and radiation therapy. This is known as oral mucositis. The sores can form on any soft tissue in your mouth, making eating, swallowing and talking difficult. This is usually short-term and goes away as you recover from treatment.

    Your doctor can give you medicines to reduce the pain when you eat, drink or speak. Some pain relief medicines can be applied directly to the mouth sores to numb them.

    Your dietitian can suggest foods to reduce discomfort. You may need to choose softer foods and nourishing fluids. If you are unable to eat and drink enough to meet your nutritional needs, you may need a feeding tube to support you during recovery. 

    Dry mouth

    Radiation therapy to the head or neck area can cause dry mouth (xerostomia), which is often long-lasting. This can make chewing, swallowing and talking difficult. A dry mouth can also make it harder to keep your teeth and mouth clean, which can increase the risk of damage to your teeth.

    For more information call Cancer Council 13 11 20 or you can download our factsheet Mouth Health and Cancer Treatment.

    Taste, smell and appetite changes

    Some treatments to the head, neck and mouth area may affect your sense of taste and smell. Treatment may change the way the salivary glands work and affect the flavour of food. Food may taste bitter or metallic, or may not have as much flavour as before.

    It is important to try to keep eating well so your body gets the nourishment it needs to maintain your weight. If you lose most or all of your sense of taste, focus on other appealing aspects of food, such as the colours and presentation of the meal. You could try experimenting with different textures and temperatures to make food more enjoyable.

    It can take several months for taste and smell changes to return to normal, and this may affect your appetite. If you do not regain your full sense of smell, a speech pathologist may be able to teach you a technique to help you regain your ability to smell. In some cases, taste changes may be permanent.

    For more information about taste, smell and appetite changes call Cancer Council 13 11 20 or you can download our Nutrition and Cancer booklet and Understanding Taste and Smell Changes fact sheet.

    Swallowing difficulties

    Chewing and swallowing involve your lips, teeth, tongue and the muscles in your mouth, jaw and throat working together. Many people with a head and neck cancer have difficulty swallowing (dysphagia) before, during or after treatment. This may be because of the tumour or the treatments, and it may be short-term or long-term. Being able to swallow is important to ensure you are eating and drinking enough.

    Signs that swallowing is difficult include: taking longer to chew and swallow; coughing or choking while eating or drinking; or food sticking in your mouth or throat like a ball.

    Surgery to the jaw, mouth or throat areas – This may make chewing and swallowing difficult because tissue has been removed or reconstructed, or because of a dry mouth.

    Surgery to the larynx or pharynx – The larynx and epiglottis act like valves and shut off the airway when swallowing so liquid or food don’t go into the lungs. Surgery to the larynx or pharynx may cause food to go down the wrong way into the lungs (aspiration). Signs of aspiration include coughing during or after swallowing, increased shortness of breath during or after a meal, and recurrent chest infections. A speech pathologist will help to manage this side effect and give you strategies to help you eat and drink safely.

    Radiation therapy – This can cause dry mouth, pain, and changes to the strength of the muscles and nerves used in swallowing. These effects could be worse if you also have chemotherapy at the same time as radiation therapy (chemoradiation).

    Swallowing test

    You may have a test before and after treatment to look at what happens when you swallow. A speech pathologist uses a movie-type x-ray known as a videofluoroscopic swallow study (VFSS) or modified barium swallow (MBS) to check that foods and liquids are going down the correct way. If more information is needed, you may have a fibre-optic endoscopic evaluation of swallowing (FEES) test during a nasendoscopy. The test results will help plan your treatment.

    Feeding tube

    After surgery or during a course of radiation therapy, you may find eating and swallowing uncomfortable or difficult. A feeding tube may be inserted to help you get the nutrition you need while your throat heals. This tube is usually temporary, but sometimes it is permanent.

    A feeding tube can help ensure you stay well nourished and hydrated. It can also help you maintain or gain weight. If you can’t swallow medicines, check with your doctor or nurse whether these can also be given through the feeding tube. Your health care team will show you how to care for the tube to prevent leakages and blockages. They’ll also let you know when the tube needs to be replaced. If the tube falls out, let your doctor know immediately. You can help prevent infections by washing your hands before using the tube, and keeping the tube and your skin dry.

    Having a feeding tube inserted is a significant change, and it is common to have a lot of questions. Adjusting to a feeding tube takes time. Talking to a dietitian or nurse can help, and a counsellor or psychologist can provide emotional support and coping strategies.


    Malnutrition and weight loss

    Some of these side effects may make eating difficult, which can cause you to lose weight. Even a small drop in your weight (e.g. 3–4 kg), particularly over a short period of time, may put you at risk of malnutrition. You can be malnourished even if you are overweight.

    Significant weight loss and malnutrition can reduce your strength, energy and quality of life. This can affect how you respond to treatment, and side effects may be more severe and your recovery slower. During treatment and recovery, a dietitian can assess whether a feeding tube will help you maintain or gain weight.

    For more information about weight loss call Cancer Council 13 11 20 or you can download our Nutrition and Cancer booklet.

    Changes to speech

    The ability to talk can be affected by surgery and radiation therapy, either from the treatment itself or from side effects such as swelling after surgery or a tracheostomy. You may lose the ability to speak clearly (dysarthria) or experience changes to your voice (dysphonia). The extent of any changes will vary depending on where the cancer is located and the type of treatment you had.

    Talking will take time and practice – it’s natural to feel distressed, frustrated and angry at times. You will need to get used to the way your new voice sounds. Use the National Relay Service to make phone calls.

    Breathing changes

    Depending on the location of the cancer, you may have difficulty breathing. People with nasal cancer may find it hard to breathe through the nose. People with cancers of the throat and larynx may feel it is harder to get air in.

    Your surgeon may need to create an alternative airway in the front of your neck to bypass the tumour and help you breathe freely. This is known as a tracheostomy. The surgeon will make a hole in the front of your neck under general anaesthetic and then place a tracheostomy tube through the hole into the windpipe (trachea). You may find the thought of a tracheostomy scary, but being able to breathe easily will make you feel more comfortable.

    You may have a temporary tracheostomy during radiation therapy or after some types of surgery, particularly when swelling is expected to the mouth and throat. Your surgeon will let you know if this is likely. With a temporary tracheostomy, the tube will usually be removed after a recovery period, and the hole will close up within a few days or weeks. At first your voice may be weak and breathy, but it should return to normal once the hole has healed. A speech pathologist can teach you to speak and assess your swallowing, and a physiotherapist can show you exercises and airway clearance techniques to make breathing easier.

    If you have a total laryngectomy, a permanent stoma or breathing hole will be created at the time of the surgery. If you need a permanent stoma, your health care team will discuss this with you and teach you how to look after it.

    Living with a tracheostomy or stoma

    Having a tracheostomy or stoma is a big change and takes some getting used to. Your specialist, nurse or speech pathologist can explain ways to manage the following changes:

    • caring for the tube or stoma – your health care team will show you how to clean and care for the tracheostomy tube or stoma
       
    • coping with dry air – the air you breathe will be much drier since it no longer passes through your nose and throat, which normally moistens and warms the air. This can cause irritation, coughing and excess mucus coming out of the tracheostomy tube or stoma. There are products available that cover the stoma or attach to the tracheostomy tube to provide heat and moisture for the trachea
       
    • swimming and bathing – you will need to use special equipment to avoid water getting into the windpipe, even in the shower. If you have a laryngectomy stoma, you may not be able to go swimming.

    Restoring speech after a laryngectomy

    Mechanical speech – A battery-powered device called an electrolarynx is used to create a mechanical voice. The device is held against the neck or cheek or placed inside the mouth. You press a button on the device to make a vibrating sound.

    Tracheoesophageal puncture (TEP) speech – Your surgeon creates a puncture between your trachea and oesophagus. A small voice prosthesis (or valve) is inserted to direct air from your trachea to the oesophagus. This creates a low-pitch, throaty voice.

    Oesophageal speech – You swallow air and force it up through your oesophagus to produce a low-pitched burp. This technique can be difficult and you will need training.

    Pain and physical discomfort

    Pain – Ongoing pain following surgery or cancer treatment may lead to distress, low mood, fatigue or reduced appetite. These can all affect your quality of life. Speak to your doctor about pain management options.

    Your physiotherapist may also give you advice on positioning for comfort, suggest exercises, or recommend other pain relief options such as transcutaneous electrical nerve stimulation (TENS).

    Stiff neck and shoulder – If you have lymph nodes removed or radiation therapy, you may have stiffness and numbness in your neck, and pain in your shoulder. This may restrict neck movement and make lifting the arm difficult. Nerve damage usually heals within 12 months, and sensation should return for many people. In some cases, these issues can be permanent.

    A physiotherapist can help reduce pain and improve posture, movement and function. Your physiotherapist may also suggest using a postural brace for shoulder support. Some regular gentle exercise will help maintain neck, jaw and shoulder range of motion.

    Reduced mouth opening – Not being able to fully open the mouth or jaw is known as trismus. It can occur after radiation therapy or surgery, and can affect eating, speech and oral hygiene. Trismus can be temporary or permanent. A speech pathologist or physiotherapist can help improve motion, and you can have medicines to reduce pain.

    For more information about pain call Cancer Council 13 11 20 or you can download our Overcoming Cancer Pain booklet.

    Changes to appearance

    Many types of surgery for head and neck cancers will change the way you look. Common physical changes include: weight loss; tube feeding; having a tracheostomy; and using speech devices. These changes may be temporary or permanent. Other common changes include:

    Scars – Improved surgical techniques mean that scarring is unlikely to be significant for most people. Scars from surgery are often hidden in the neck or in skin creases on the face, and usually fade over time.

    Face – If your eye or part of the jaw, nose, ear or skin is removed, your face will look different. This is the case for many people who have had extensive surgery for head and neck cancer. Some people will have reconstructive surgery using tissue from another part of the body, which may also change their appearance. Other people may have a prosthesis, which is a soft plastic replacement for the tissue that has been removed (for example, a nose prosthesis). A prosthesis is fitted by a specialist in facial prosthetics and blends in well with your own features. If it is likely you will need a prosthesis, the doctor will discuss this with you before the operation.

    Jaw – In some cases, your surgeon will cut through your jaw (mandibulotomy) and reconstruct it with a plate. This involves a cut through your chin and lip, and the scars will be visible for some time.

    Swelling – Surgery or radiation therapy can damage lymph nodes and this can cause swelling in the tissues in the head and neck. Sometimes the swelling develops internally and is difficult to see. This swelling is known as lymphoedema.

    Tips for adjusting to appearance changes

    You may be distressed or embarrassed about significant changes to the way you look. You may feel that any noticeable changes make you less attractive and worry that others will reject you.

    Give yourself time to get used to any physical changes. Try to see yourself as a whole person (body, mind and personality) and not just focus on the part of you that has changed. Many people find it helps to talk about their concerns with a family member, friend or counsellor.

    Talk to your doctors about how surgery and reconstruction will affect your appearance and the possibility of having plastic surgery or a facial prosthesis to rebuild parts of your face and neck. They may be able to suggest strategies to help you cope with the changes and refer you to support services.

    You may also like to get in touch with the Look Good Feel Better program. This free two-hour program explains how to use skin care, hats and wigs to help restore appearance and self-esteem during and after treatment. It is aimed at men and women. 

    Impact on sexuality and intimacy

    Head and neck cancer can affect your sexuality in emotional and physical ways. You may worry that you are less sexually attractive to partners or you may be grieving the loss of your former body. Reduced interest in sex (low libido) is common during cancer treatment. Tiredness, or anxiety about cancer returning, may also affect your sexual wellbeing.

    Surgery to the mouth may reduce sensation in the tongue or lips. This can affect the enjoyment and stimulation from kissing, but sensation should return in 12–18 months. Side effects such as dry mouth, bad breath, poor tongue and lip movement, facial palsy, scars, or a stiff neck and jaw can also make kissing and oral sex difficult or less pleasant.

    Surgery to your face and mouth may also cause problems with controlling saliva. If you have a dry mouth, kissing and oral sex may be uncomfortable. If your speech is affected, this may affect your self-esteem and ability to express yourself during sex.

    You or your partner may be afraid of having sex if the cancer was HPV-related. Research has shown that it is uncommon for long-term partners of people infected with oral HPV to also be infected. New partners may be at risk and may want to use barrier contraception, but in most people the virus is cleared by the immune system. Some people choose to express their feelings in other ways, such as hugging, holding hands or touching cheek-to-cheek. You may wish to talk to a counsellor or sexual health professional, by yourself or with a partner, to help you find solutions to any sexual changes.

    For more information on sexuality and intimacy call
    Cancer Council 13 11 20 or you can download our booklet  Sexuality, Intimacy and Cancer.

    Vision changes

    If the cancer is in your eye socket, the surgeon may have to remove your eye (orbital exenteration). The empty eye socket will be replaced by a sphere of tissue from another part of your body. This keeps the structure of the eye socket.

    Later you can be fitted for an artificial eye, which is painted to look like your remaining eye and surrounding tissue. The eye is like a large contact lens that fits over the new tissue in the eye socket.

    You will still be able to see with your remaining eye, but your depth perception and peripheral vision will be poorer. Your changed vision should not prevent you from continuing activities such as driving or playing sport, but it may take time to get used to these changes. Before you start driving again, tell your driver licensing authority about the changes in your vision so that they can guide you on any restrictions that may apply. The licensing authority may request information from your doctor to decide if you are medically fit to drive.

    Lymphoedema

    Lymphoedema is swelling that occurs in soft tissue. If lymph nodes have been removed in a lymphadenectomy or damaged during surgery or radiation therapy, it may prevent lymph fluid from draining properly. This causes fluid build-up and swelling in the neck and face.

    People who have had surgery followed by radiation therapy to the neck are more at risk, especially if both sides are treated. The likelihood of developing lymphoedema will also depend on the number of lymph nodes removed during surgery. Lymphoedema can be temporary or permanent and may change your appearance.

    Symptoms of lymphoedema are easier to manage if the condition is treated early. The main signs of lymphoedema include swelling, redness and skin warmth, which may come and go. It is important to look out for these signs and to see your doctor if they appear.

    Preventing and managing lymphoedema

    Sometimes the swelling and other signs of lymphoedema can take months or years to develop, although some people who are at risk never develop the condition.

    Some hospitals have specialist physiotherapists who can teach you simple exercises to reduce your risk of developing lymphoedema or show you ways to manage it if you have developed it. There are also outpatient and private lymphoedema practitioners.

    Lymphoedema practitioners can provide education on prevention and provide a personalised treatment program. This may include lymphatic drainage massage, exercises, low level laser therapy, skin care and compression garments, if needed.

    For more information about lymphoedema call
    Cancer Council 13 11 20 or you can download our factsheet Understanding Lymphoedema.

    This website page was last reviewed and updated January 2020.

    Information reviewed by: A/Prof David Wiesenfeld, Oral and Maxillofacial Surgeon, Director, Head and Neck Tumour Stream, The Victorian Comprehensive Cancer Centre at Melbourne Health, VIC; Alan Bradbury, Consumer; Dr Ben Britton, Senior Clinical and Health Psychologist, John Hunter Hospital, NSW; Dr Madhavi Chilkuri, Radiation Oncologist, Townsville Cancer Centre, The Townsville Hospital, QLD; Jedda Clune, Senior Dietitian (Head and Neck Cancer), Sir Charles Gairdner Hospital, WA; Dr Fiona Day, Staff Specialist, Medical Oncology, Calvary Mater Newcastle, and Conjoint Senior Lecturer, The University of Newcastle, NSW; Dr Ben Dixon, ENT, Head and Neck Surgeon, Peter MacCallum Cancer Centre and St Vincent’s Hospital Melbourne, VIC; Emma Hair, Senior Social Worker, St George Hospital, NSW; Rosemerry Hodgkin, 13 11 20 Consultant, Cancer Council WA; Kara Hutchinson, Head and Neck Cancer Nurse Coordinator, St Vincent’s Hospital Melbourne, VIC; A/Prof Julia Maclean, Speech Pathologist, St George Hospital, NSW; Prof Jane Ussher, Chair, Women’s Health Psychology, Translational Health Research Institute (THRI), School of Medicine, Western Sydney University, NSW; Andrea Wong, Physiotherapist, St Vincent’s Hospital Melbourne, VIC.

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