Head and Neck Cancers
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Head and Neck Cancers
Managing side effects
Treatment for head and neck cancer is often difficult both physically and emotionally, and it will take some time to recover. Side effects can be temporary, long-lasting or permanent, and some will need ongoing management and treatment.
This section provides information and tips to help you manage common side effects, including:
- mouth problems such as mouth sores and dry mouth
- changes to taste, smell and appetite
- swallowing problems, including using a feeding tube
- malnutrition and weight loss
- changes to how you talk
- breathing changes, including having a breathing tube (tracheostomy) or hole (stoma) and restoring speech
- ongoing pain, numbness and stiffness
- changes to how you look
- impact on sexuality and intimacy
- changes to vision or hearing
- ongoing swelling known as lymphoedema.
You are unlikely to have all of these side effects, and some people have just a few or none. Your treatment team can give you an idea of what to expect and watch out for after your treatment.
If you do experience any of these side effects, ask your treatment team which health professionals can help you manage them. You can also call Cancer Council 13 11 20 for information and support.
It is common to feel very tired during or after treatment, and you may lack the energy to carry out day-to-day activities. Fatigue for people with cancer is different from tiredness, as it may not go away with rest or sleep. You may lose interest in things that you usually enjoy doing or feel unable to concentrate on one thing for very long. For some people, fatigue continues for months or years after treatment ends.
Let your treatment team know if you are struggling with fatigue. Sometimes fatigue can be caused by a low red blood cell count, or be a side effect of drugs or a sign of depression, which can all be treated. There are often programs available through hospitals and treatment centres to help you manage fatigue.
Tips for managing fatigue
- Plan your day. Set small manageable goals and rest before you get too tired.
- Try to keep your schedule as regular as possible, e.g. avoid sleeping in, go to bed at your usual time, and take a short nap if you get tired during the day.
- Eat a healthy, well-balanced diet to keep energy levels up.
- Regular light to moderate exercise has been shown to reduce fatigue. Even a walk around the block can help. A physiotherapist or exercise physiologist can develop an exercise program for you, but talk to your doctor first.
- Ask for and accept help from family and friends, e.g. with shopping or childcare.
- Don’t expect to be able to do everything you used to do right away. Gradually increase the amount of activity you do each day.
Some head and neck cancer treatments can cause mouth sores and ulcers and saliva changes. These problems can make eating difficult, but there are ways to manage them.
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 and make 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 medicines can be applied directly to the mouth sores to numb them. It is common to need more than one type of medicine for pain control.
Your speech pathologist and 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 stay well nourished, you may need a feeding tube to support you during treatment and recovery.
Dry mouth and saliva changes – Radiation therapy to the head or neck area and surgery that affects the salivary glands can reduce the amount of saliva in your mouth, make your mouth dry or make your saliva thick and sticky. This is known as xerostomia and it is often long-lasting. Xerostomia 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 tooth decay.
How to relieve mouth problems
Mouth sores and ulcers
- Rinse your mouth often – when you wake up, after you eat or drink, and at bedtime. Ask your doctor or nurse what type of alcohol-free mouthwash to use and how often to use it. They may give you an easy recipe for a homemade mouthwash. Talk to your doctor and nurse about medicines to relieve pain and help with healing.
- Use a soft toothbrush and replace it often to reduce infections. Brush gently after meals and before bed.
- Suck on ice cubes.
- Avoid rough, crunchy or dry foods (e.g. chips, nuts, toast, crackers). Also avoid vinegar, spices, salty foods, alcohol, very hot or very cold foods and drinks, and citrus or tangy tomato-based food and juice.
- Use a lip balm to keep your lips moist.
- Tell your doctor, dietitian or speech pathologist if you are eating and drinking less because it is hard to swallow.
- Ask your dentist about an oral care plan and have regular check-ups.
- Carry a water bottle and keep having regular sips throughout the day.
- Limit alcohol and caffeine (these can be dehydrating) and avoid smoking.
- Chew sugar-free gum to help the flow of saliva.
- Put lanolin on your lips (avoid petroleum-based products).
- Soften food by dipping it into milk or soup, or moisten it with gravy, sauce, cream or custard.
- Have drinks with meals to help soften the food and make it easier to swallow.
- Acupuncture may help to improve dry mouth. Talk to your doctor before trying it.
- Use artificial saliva, dry mouth gels or lubricating agents from the chemist. Swirl grapeseed oil in your mouth and then spit out.
Having treatments to the head, neck and mouth area may affect your sense of taste and smell.
After some surgeries to the nasal cavity, you may lose your sense of smell, and your sense of taste may also be affected. If you have a laryngectomy, air will no longer pass through your nose, which can affect your sense of smell. Surgery to the mouth may also change how food tastes.
Some treatments can 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 enough nourishment to maintain your weight. If you lose most or all of your sense of taste, try experimenting with different textures and temperatures to make food more enjoyable. You could also focus on other appealing aspects of food, such as the colours and presentation of the meal. Another option is to do something else while eating, such as watching TV or reading a book – this might distract you from the food not tasting like it did before.
It can take several months for your sense of taste and smell to return to normal, and this may affect your appetite. If your sense of smell continues to be affected, 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.
How to manage taste and smell changes
- Add extra flavour to food if you find it tastes bland, e.g. use fresh herbs.
- Rinse your mouth before eating to clean any coating from your tongue and help improve taste. Use the mouthwash recommended by your treatment team.
- After each meal, brush your teeth and rinse with the recommended mouthwash.
- If you smoke, try to quit. Smoking reduces appetite and changes the taste of food. Call the Quitline on 13 7848 for support.
- Drink through a paper or silicone straw so the taste of drinks isn’t as strong. (Metal straws may add a metallic taste.)
- Encourage your appetite with aromatic foods.
- If food tastes “off”, freshen your mouth by drinking tea, or eating ice-cream and soft fruits (e.g. watermelon).
- Ask to see a dietitian for more suggestions.
- If you lose your sense of smell, take extra care with any safety issues that usually rely on a sense of smell. For example, check the use-by dates of foods, turn off gas appliances properly, and make sure that the smoke detectors in your home are working.
- If food smells bother you, ask your family and friends to cook for you.
- Find ways to enjoy food more. Choose foods that are fresh and full-flavoured so you feel the sensation on your tongue.
- If smell changes stop you eating enough, you may lose weight. Use nutritional supplement drinks (e.g. Sustagen, Ensure, Resource) to help maintain your strength and energy. These supplements are sold in many pharmacies and supermarkets.
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 cancer 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; taking longer to eat a meal than your family and friends; coughing or choking while eating or drinking; food sticking in your mouth or throat; or pain when swallowing.
Surgery to the jaw, mouth or throat areas – This may make chewing and swallowing difficult because tissue has been removed or reconstructed, or because the surgery has caused dry mouth.
Surgery to the larynx or pharynx – Surgery to the larynx or pharynx may cause food to go down the wrong way into the lungs. This is known as 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 can check how your swallowing is working 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 have chemotherapy at the same time as radiation therapy (chemoradiation).
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 or modified barium swallow study to check that foods and liquids are going down the correct way. You may also have a fibre-optic endoscopic evaluation of swallowing test during a nasendoscopy to test your how well you can swallow. The test results will help plan how any swallowing issues are treated.
How to eat when swallowing is difficult
- See a speech pathologist for ways to change your chewing and swallowing action to help reduce discomfort or food going down the wrong way (aspiration). They can also show you swallowing exercises to do and ways to change your posture. To find a speech pathologist, speak with the team at your treatment centre or visit Speech Pathology Australia.
- Continue to eat and drink whenever possible throughout your treatment to keep your swallowing muscles moving and working. This will reduce the likelihood of long-term swallowing problems.
- Ask your doctor to recommend medicines that relieve discomfort when swallowing. Some of these medicines come as mouth rinses.
- Talk to a speech pathologist about ways to adjust the consistency of food to make it easier to swallow.
- Talk to a dietitian to make sure you are getting enough nutritious food and drink.
- See the recipes in two free online books from Griffith University – From Treatment to Table and Beyond the Blender: Dysphagia Made Easy.
After surgery or 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 maintain your weight and energy. It is important to avoid losing a lot of weight during treatment and to have enough nourishment and fluids. If you can’t swallow medicines, check with your doctor, nurse or pharmacist 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 it leaking or becoming blocked.
They will also let you know when the tube needs to be replaced. If the tube falls out, let your treatment team know immediately. You can help avoid infections by washing your hands before using the tube, and keeping the tube and your skin dry.
If you have a feeding tube, it is still important to brush your teeth and keep your mouth clean even though you are not eating or drinking.
Having a feeding tube inserted is a major change, and it is common to have a lot of questions. Getting used to a feeding tube takes time. Talking to a dietitian or nurse can help, and a psychologist or counsellor can provide emotional support and suggest ways to cope.
Types of feeding tubes
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), especially over a short period of time, may put you at risk of malnutrition. You can be malnourished even if you are overweight.
Unplanned 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.
How to prevent unplanned weight loss
- Treat food like medicine: something you have to have so you can feel better.
- Eat 5–6 small meals a day rather than three large ones each day.
- Include high-energy and high-protein foods at every meal or snack. For example, drink milk rather than water and choose cheese and biscuits over lollies.
- Try ready-to-use nutritional supplement drinks from supermarkets and pharmacies (e.g. Sustagen, Ensure, Resource).
- If it is hard to swallow fluids without choking, talk to a speech pathologist for advice on thickening the supplement drink. (Thicker fluids are easier to control in your mouth so there is less chance of them going down the wrong way.)
- Keep a selection of snacks handy, e.g. in your bag or car.
- Talk to your doctor, nurse or dietitian if you are losing weight, or if you have pain or discomfort when swallowing food or drink.
The ability to talk can be affected by surgery and radiation therapy. This may be because of side effects such as swelling and irritation, because of a tracheostomy or laryngectomy, or because other structures have been removed. You may find it hard to speak clearly or notice that your speech is slurred, or you may find your voice has changed. The extent of any changes will vary depending on the location of the cancer, how advanced it was, and the 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. The National Relay Service can help you make phone calls.
How to manage changes to speech
- Try non-verbal ways to communicate – gesture, point, nod, smile, mouth words, write things down or ring a bell to call people.
- Use a computer, tablet, mobile phone or notebook to write and send notes.
- Work with a speech pathologist to improve your speech and learn ways to communicate with family and friends. The speech pathologist may give you some exercises to improve the strength and range of motion of the lips, tongue, jaw and larynx.
- Encourage family and friends to be honest if they don’t understand you and to learn new ways to communicate with you. Ask them not to avoid conversation even if it is difficult at first. They may need to be patient and give you time to respond.
- Speak to a counsellor or psychologist if you are finding it difficult to cope with speech changes.
Some people treated for head and neck cancer need a tracheostomy. This is an alternative airway created in the front of the neck so they can keep breathing freely.
Having a tracheostomy – If you have a tracheostomy, a small cut in the lower neck allows a tube to be inserted into the windpipe. This can be used for breathing during and after surgery when the mouth or throat becomes swollen. It is usually removed within one week of surgery once the swelling has gone down. In some cases, a tracheostomy is needed for longer or even during radiation therapy, but this is uncommon.
The thought of a tracheostomy may be confronting and scary – talk to your treatment team about how you are feeling and ask them to explain why the tracheostomy is needed. A tracheostomy will allow you to breathe despite swelling in your mouth or throat, and it will also make it easier for you to cough up mucus after a long operation. Initially you may not be able to speak, but you will be supported by your treatment team while you have a tracheostomy in place. The speech pathologist and physiotherapist will play an important role in your care.
Once the tracheostomy tube is removed, the hole in your neck normally closes within days. During this time, your voice may be weak and breathy, returning to normal when the hole closes.
Having a laryngectomy – If you have a total laryngectomy, a permanent stoma or breathing hole will be created in your lower neck at the time of the surgery. This will be discussed with you before surgery so you know exactly what to expect, including how you will speak again. If you need a permanent stoma, the speech pathologist and nurses will teach you how to look after it.
Types of alternative airways for breathing
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 concerns:
- caring for the tube or stoma – you will be shown 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 mouth, which normally moistens and warms the air. This can cause irritation, coughing and extra 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 windpipe
- swimming and bathing – you will need to use a special stoma cover 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
If the larynx (voice box) is removed, there are various ways to speak.
Voice prosthesis speech – The surgeon makes an opening between your trachea and oesophagus. This is called a tracheoesophageal fistula or puncture. A small voice prosthesis (or valve) is inserted to direct air from your trachea to the oesophagus. This will allow you to speak clearly in a low-pitched, throaty voice.
Mechanical speech – A battery-powered device (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.
Oesophageal speech – You swallow air and force it up through your oesophagus to produce a low-pitched sound. This method can be difficult and you will need training.
Ongoing pain, numbness and restricted movement in the head and neck area may lead to distress, low mood, fatigue or reduced appetite. These can all affect your quality of life. Speak to your treatment team about ways to manage pain and regain movement, which may include medicines, positioning for comfort, exercises and other methods.
You may need a team of health professionals to help you manage ongoing pain or discomfort. Your treating specialist, cancer care coordinator or GP can put you in touch with the appropriate people, such as a physiotherapist, occupational therapist, speech pathologist, massage therapist, psychologist and pain specialist.
Nerve damage – If you have lymph nodes removed from your neck, you may have some nerve damage that makes your neck feel tight and numb, and you may also have pain and stiffness in your shoulder. This may affect how much you can move your neck and make it hard to lift the arm. Nerve damage usually heals within 12 months, and feeling should return for many people. In some cases, these issues can be permanent.
Swelling and pain – It is common to develop some swelling, pain and stiffness in the head and neck area if you have radiation therapy as your main treatment or after surgery. This gradually improves with time. Sometimes swelling called lymphoedema can be longer lasting.
Reduced mouth opening – Not being able to fully open the mouth or jaw is known as trismus. It can happen 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.
Pins and needles or numbness – Some chemotherapy drugs can cause nerve damage that leads to tingling, pain or numbness in the hands and feet. This is known as peripheral neuropathy, and it is often temporary but can be permanent. Let your treatment team know about any tingling, pain or numbness, as there are ways to manage these symptoms.
Many types of surgery for head and neck cancer will cause temporary or permanent changes to the way you look.
Weight loss – It is common to lose weight during treatment and it can be hard to put it back on.
Feeding tube – People who need a feeding tube or tracheostomy tube may feel self-conscious about it.
Scars – Improved surgical methods mean that most people won’t have major scarring. Surgeons will try to hide scars in skin creases in the neck or on the face, and the scars usually fade over time. Scars from radiation therapy may change the colour or texture of the skin.
Face – In some cases, removing the cancer means removing an eye or part of the jaw, nose, ear or skin. Some people have reconstructive surgery using tissue from another part of the body. Other people may have a prosthesis (e.g. a nose prosthesis), a soft plastic replacement for the tissue that has been removed. A prosthesis will be specially fitted to blend in well with your own features. If you are likely to need a prosthesis, the surgeon will discuss it with you before the operation.
Jaw and teeth – For certain cancers, your surgeon will need to 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 noticeable for some time. If you have lost teeth due to cancer treatment, you may be able to have further surgery to replace or reconstruct them.
Swelling – Surgery or radiation therapy can damage lymph nodes, and this can cause swelling in the tissues in the head and neck. This is known as lympheodema.
Tips for adjusting to appearance changes
- Give yourself time to get used to any physical changes. Some changes may be temporary and improve with time.
- Try to see yourself as a whole person (body, mind and personality) rather than focusing only on the part of you that has changed.
- Talk about how you are feeling with someone, such as a family member, friend, social worker, occupational therapist or psychologist.
- Ask your treatment team how surgery will affect your appearance and if you will be offered reconstructive surgery or a prosthesis to rebuild parts of your face and neck. Your team can suggest ways to cope with the changes and refer you to support services.
- Use clothing, makeup or accessories to highlight your best features.
- Book into a free Look Good Feel Better workshop and learn how to use skin care, hats and wigs to restore appearance and self-esteem.
Head and neck cancer can affect your sexuality in both emotional and physical ways. Reduced interest in sex (low libido) is common during cancer treatment. Continuing to feel tired after treatment and feeling anxious about cancer returning may also affect your sexual wellbeing. If your appearance has changed, you may worry that you are less sexually attractive or you may be grieving the loss of how you used to look.
Treatment for head and neck cancer sometimes causes side effects such as dry mouth, bad breath, thick and sticky saliva, poor tongue and lip movement, facial palsy, scars, or a stiff neck and jaw. These side effects can all make kissing and oral sex difficult or less pleasant.
Surgery to the mouth may reduce feeling in the tongue or lips. This can affect the enjoyment and stimulation from kissing, but feeling should return in 12–18 months. If your speech is altered, 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. A long-term partner is likely to have already had the virus and cleared it without having any symptoms. Their immune system remembers it and stops an infection developing again. Talk to your doctors if you are concerned about the risk of passing on HPV to a long-term or new partner.
Some people choose to express their feelings in other ways, such as cuddling, holding hands or touching cheek-to-cheek. You may wish to talk to a psychologist or sexual health professional, by yourself or with a partner, to help you find ways to adapt to any sexual 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 won’t be as good. You will usually still be able to drive and play sport, but it may take time to get used to the changes. Before you start driving again, tell your driver licensing authority about the changes in your vision, as there may be restrictions you have to follow. The licensing authority may request information from your doctor to decide if you are medically fit to drive.
Some treatments for head and neck cancer can affect your hearing. Certain chemotherapy drugs can cause hearing loss. Sometimes the first sign of this is ringing in the ears (tinnitus), so let your doctors know if you experience this. Radiation therapy can damage the internal structure of the ear, causing fluid to build up behind the eardrums and leading to loss of hearing. Some surgeries to the head and neck, especially for nasopharyngeal cancer, can cause temporary or permanent hearing loss.
Ask your treatment team whether you are at risk of hearing loss and if you should have your hearing tested after treatment ends.
If lymph nodes have been removed in a neck dissection or damaged by radiation therapy, it may prevent lymph fluid from draining properly. The fluid can build up and cause swelling in the neck, face and throat. This is known as lymphoedema. It can be temporary or permanent and may change your appearance. People who have had surgery followed by radiation therapy to the neck are more at risk, especially if both sides of the neck are treated. You are also more likely to develop lymphoedema if a lot of lymph nodes were removed.
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. Sometimes the swelling develops internally and is hard to see but the area may feel different (e.g. mild tingling). It is important to look out for these signs and to visit 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 and occupational therapists who can teach you simple exercises to reduce your risk of developing lymphoedema, or show you ways to manage it if you have it already. There are also outpatient and private lymphoedema practitioners who can help with prevention and offer treatments such as lymphatic drainage massage, exercises, low-level laser therapy, skin care and compression garments, if needed. To find a lymphoedema practitioner, visit lymphoedema.org.au.
This information is reviewed by
This information was last updated September 2021 by the following expert content reviewers: A/Prof Richard Gallagher, Head and Neck Surgeon, Director of Cancer Services and Head and Neck Cancer Services, St Vincent’s Health Network, NSW; Dr Sophie Beaumont, Head of Dental Oncology, Dental Practitioner, Peter MacCallum Cancer Centre, VIC; Dr Bena Brown, Speech Pathologist, Princess Alexandra Hospital, and Senior Research Fellow, Menzies School of Health Research, QLD; Dr Teresa Brown, Assistant Director, Nutrition and Dietetics, Royal Brisbane and Women’s Hospital, QLD; Lisa Castle-Burns, Head and Neck Cancer Specialist Nurse, Canberra Region Cancer Centre, The Canberra Hospital, ACT; A/Prof Ben Chua, Radiation Oncologist, Royal Brisbane and Women’s Hospital, GenesisCare Rockhampton and Brisbane, QLD; Elaine Cook, 13 11 20 Consultant, Cancer Council Victoria; Dr Andrew Foreman, Specialist Ear, Nose and Throat Surgeon, Royal Adelaide Hospital, SA; Tony Houey, Consumer; Dr Annette Lim, Medical Oncologist and Clinician Researcher – Head and Neck and Non-melanoma Skin Cancer, Peter MacCallum Cancer Centre and The University of Melbourne, VIC; Paula Macleod, Head, Neck and Thyroid Cancer Nurse Coordinator, Northern Sydney Cancer Centre, Royal North Shore Hospital, NSW; Dr Aoife McGarvey, Physiotherapist and Accredited Lymphoedema Practitioner, Physio Living, Newcastle, NSW; Rick Pointon, Consumer; Teresa Simpson, Senior Clinician, Psycho-Oncology Social Work Service, Cancer Therapy Centre, Liverpool Hospital, NSW.