Managing side effects of head & neck cancers

Monday 1 May, 2017

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On this page: Mouth problems | Taste, smell and appetite changes | Swallowing difficulties | Malnutrition | Changes to speech | Breathing changes | Pain and physical discomfort | Changes to appearance | Vision changes | Lymphoedema | Key points


Head and neck cancer, and its treatments, can change your ability to chew, swallow or talk. These side effects can be temporary or permanent, and will require ongoing management and rehabilitation.

This section provides information and tips to help you manage side effects, including coping with changes in your eating, breathing and speech, and managing pain. For additional support, information and referral to services, call Cancer Council 13 11 20.

Mouth problems

Dry mouth

Radiotherapy to the head or neck area can cause dry mouth (xerostomia). This can make chewing and swallowing difficult. A dry mouth can also make it harder to keep your teeth and mouth clean, which can increase the risk of developing cavities.

Mouth sores and ulcers

During chemotherapy and radiotherapy, mouth sores are common. The sores can form on any soft tissue in your mouth, making eating, swallowing and talking difficult.

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.

How to relieve mouth problems

Dry mouth

  • Ask your dentist about an oral care plan and have regular check-ups.
  • Carry a water bottle and have regular sips throughout the day.
  • Limit alcohol and caffeinated drinks as these are dehydrating, and avoid smoking.
  • Add moisture to meals with extra sauce or gravy.
  • Chew sugar-free gum to stimulate the flow of saliva.
  • Soften food by dipping it into milk or soup, or moisten it with gravy, sauce, cream or custard.
  • Drink milk with meals to help soften the food and make it easier to swallow.
  • Try acupuncture as this may help increase saliva.
  • Use lubricating agents or dry mouth gels available from the chemist. Swirl olive oil in your mouth and then spit out.

Mouth sores and ulcers

  • Talk to your doctor about mouthwashes or medicines to relieve ulcers and to keep your mouth fresh.
  • Use a soft-bristled toothbrush and replace it often to reduce infections. Brush gently.
  • 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, citrus or tomato-based food and juice.
  • Gargle with 1/2 tsp salt plus 1/2 tsp baking soda in a glass of warm water. Use frequently as a mouthwash.
  • Tell your doctor or dietitian if you have ongoing or severe difficulty swallowing.
  • See Mouth Health and Cancer Treatment.

Difficulty kissing

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 due to changes in oral bacteria, poor tongue and lip movement, scars, or a stiff neck and jaw can also make kissing difficult or less pleasant.

Some people choose to express their feelings in other ways, such as hugging, holding hands or touching cheek-to-cheek. However, if you or your partner are distressed by these changes, it may help to talk to a counsellor.

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 cause changes in taste. Food may taste bitter or metallic, or may not have as much flavour as before.

It can take several months for taste changes to return to normal, and this may affect your appetite. See the tips below for ways to manage changes to taste and smell. If you do not regain your full sense of smell, a speech pathologist may be able to teach you a new technique.

For further information, see Nutrition and Cancer or call Cancer Council 13 11 20.

How to manage taste and smell changes

Taste

  • Add extra flavour to food if it tastes bland, e.g. use fresh herbs.
  • Freshen your mouth with sugar- free mints or gum, and brush your teeth after meals.
  • If you smoke, try to quit. As well as damaging your health, smoking reduces appetite and changes the taste of food. Call the Quitline on 13 7848 or visit quitnow.gov.au.
  • Use a straw so the taste of drinks isn't as strong.
  • Stimulate your appetite with aromatic foods and ingredients.
  • Avoid bitter or metallic-tasting foods such as coffee and chocolate.
  • If food tastes "off", rinse your mouth by drinking tea, or eating ice-cream and soft fruits such as watermelon.
  • See a dietitian for additional suggestions.

Smell

  • If you lose your sense of smell, take precautions such as checking the use-by dates of foods and installing smoke detectors in your home.
  • If loss of smell stops you eating enough, you may lose weight. Use nutritional supplement drinks to increase nutritional intake, e.g. Ensure or Resource. These are available from most pharmacies.
  • Find ways to enjoy food more.
  • Choose foods that are fresh and full-flavoured for a sensation on your tongue.
  • See Understanding Taste and Smell Changes for more information.

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 difficulty swallowing may be short-term or long-term. Being able to swallow is important for adequate nutrition.

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 swallowing difficult because tissue has been removed or reconstructed or because of a dry mouth.

Removing part of the larynx (partial laryngectomy)

Surgery may cause food to go down the wrong way into the lungs (aspiration). This is because the larynx and epiglottis act like valves and shut off the airway when swallowing so liquid or food don't go into the lungs. Signs of aspiration include coughing during or after swallowing.

Radiotherapy

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 radiotherapy (chemoradiotherapy).

Swallowing test

You may have a test before and after treatment to look at what happens when you swallow. A speech pathologist uses a movietype x-ray known as a videofluoroscopic swallowing study (VFSS) or modified barium swallow (MBS) to check that foods and liquids are going down the correct way. If more detail 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.

How to manage swallowing difficulties

  • See a speech pathologist for ways to change your swallowing action to help reduce discomfort or food going down the wrong way (aspiration). They can also show you swallowing exercises to complete during treatment. To find a speech pathologist, speak with the health care team at your treating centre or visit speechpathologyaustralia.org.au.
  • Continue to eat and drink whenever possible during treatment to keep your swallowing muscles moving and working. This will reduce the likelihood of long-term swallowing problems.
  • Ask your doctor for medicines to relieve discomfort when swallowing. Some medicines come as mouth rinses.
  • Talk to a dietitian or speech pathologist about ways to adjust the consistency of food to make it easier to swallow.
  • See the Laryngectomee Association of NSW's cookbook for recipes.

Feeding tube

After surgery or during radiotherapy treatment, you may find eating and swallowing uncomfortable and need to have food through a feeding tube (also called enteral feeding) to help you get the nutrition you need while your throat heals. This tube is usually temporary, but is sometimes 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. Washing your hands before using the tube and keeping the tube and your skin dry will help prevent infections.

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, but talking to a dietitian or nurse may help.

Types of feeding tubes

Temporary feeding tube

A thin tube is put through your nostril, down the throat and oesophagus into the stomach. This is called a nasogastric or NG tube.

It is usually used if you need a feeding tube for less than 4 weeks – for example, for the first few days or weeks after surgery when you're unable to eat.

The NG tube is usually put in and removed by a doctor or nurse. Specially prepared food will be put down the tube.

A diagram of Temporary feeding tube

Long-term or permanent feeding tube

A tube is inserted through an opening on your abdomen into the stomach. This is called a gastrostomy tube.

If the tube is inserted by endoscope, it is called a PEG (percutaneous endoscopic gastrostomy). If an x-ray is used to guide the tube, this is called a RIG (radiologically inserted gastrostomy). Sometimes, the feeding tube is placed by surgical incision (surgical gastrostomy).

A diagram of Permanent feeding tube

Malnutrition

The side effects discussed above 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 may be malnourished even if you are overweight.

Significant weight loss and malnutrition can reduce your energy, strength 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 maintain your weight.

How to prevent unplanned weight loss

  • Eat small meals frequently.
  • 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. Examples include Sustagen, Ensure and Resource Fruit Flavoured Beverage. Many pharmacies and supermarkets sell these specially formulated drinks. You don't need a prescription.
  • If you are having trouble swallowing, talk to a speech pathologist for advice on thickening the supplement.
  • For more information, see Nutrition and Cancer or call Cancer Council 13 11 20.

Changes to speech

The ability to talk can be affected following surgery and radiotherapy, either by the treatment itself or by side effects such as a tracheostomy or swelling after surgery. You may lose the ability to speak clearly (dysarthria) or the ability to produce sound (dysphonia). The degree and duration of any change will vary depending on the location of the tumour and treatment.

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.

How to manage changes to speech

  • Try non-verbal ways to communicate – gesture, point, nod, smile, mouth words or ring a bell to call people.
  • Use a notepad or technology (computer, tablet, mobile phone) to write notes.
  • Ask people to speak louder or confirm the message to check what you heard was correct.
  • Encourage family and friends to be honest if they don't understand you and to learn new ways to communicate with you.
  • Work with a speech pathologist to improve your speech and learn strategies for communicating with your family and friends (see restoring speech after a laryngectomy).
  • Speak to a counsellor or psychologist about any problems or frustrations.

Breathing changes

If breathing is difficult or swelling of the airway is expected after surgery, the surgeon will make a hole in the front of your neck under general anaesthetic. This is known as a tracheostomy. A tracheostomy tube is placed through the hole into the windpipe (trachea), and this allows you to breathe.

You will have a temporary tracheostomy after most types of surgery, and it will usually be done at the same time. 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 with a simple dressing. At first your voice may be weak and breathy, but it should return to normal once the stoma has healed. Your speech pathologist will teach you to speak and assess your swallowing, and your physiotherapist will show you breathing exercises and airway clearance techniques to make breathing easier.

Occasionally, people need a tracheostomy tube for several weeks during radiotherapy or on a permanent basis. If you have a total laryngectomy, a permanent stoma or breathing hole will be created at the time of the surgery. A laryngectomy tube may be used to keep the stoma from becoming smaller. If you need a permanent stoma, your health care team will discuss this with you and teach you how to look after it.

Some states have support groups for people with head and neck cancers. Call Cancer Council 13 11 20 for details.

Tracheostomy

A tracheostomy is a surgically created hole (stoma) in your windpipe (trachea) that provides an alternative airway for breathing. A tracheostomy tube is inserted through the hole.

A diagram of tracheostomy

Living with a tracheostomy or stoma

Having a stoma or tracheostomy is a big change in a person's life and takes some adjustment. Feeling self-conscious about the way the stoma makes you look and speak is not unusual. Addressing your concerns may help you come to terms with the change. See ways to get support.

Caring for the tube

Your health care team will show you how to clean and change the tracheostomy or laryngectomy tube.

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/ stoma. Your speech pathologist or nurse will show you products that cover the stoma or to attach to the tracheostomy tube. This will provide heat and moisture for the trachea.

Swimming and other water sports

You will need to use special equipment to avoid water getting into the windpipe.

Restoring speech after a laryngectomy

If changes to your voice are long-term, such as after a total laryngectomy, a speech pathologist may use a variety of methods to help you use your voice again.

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 into the oesophagus. This creates a low-pitch, "throaty" voice. TEP is usually done during the laryngectomy or later.

Oesophageal speech

You swallow air and force it up through your oesophagus to produce a low-pitched burp. This technique can be difficult and requires 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). For more information, see Overcoming Cancer Pain or call Cancer Council 13 11 20.

Stiff neck and shoulder

If you have lymph nodes removed or radiotherapy, 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 gentle regular 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 radiotherapy, 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.

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.

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 part of the jaw, nose or skin is removed, your face will look different. Some people will have a reconstruction with a prosthesis, which is a soft plastic replacement for the tissue that has been removed. A prosthesis is fitted permanently 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

During surgery or radiotherapy lymph nodes can be damaged and this can cause swelling in the head and neck areas. Sometimes the swelling develops internally and is difficult to see. Lymphoedema can be temporary or permanent and may change your appearance. This usually improves with time but some people find lymphoedema therapy helps.

Tips for adjusting to appearance changes

You may be distressed or embarrassed about significant changes to your appearance. You may feel that any visible changes make you less attractive and worry that others will reject you. Try to 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.

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. Visit lgfb.org.au for more information and to book into a workshop.

Managing fatigue

Fatigue, or feeling exhausted and lacking energy for daily activities, is a common side effect of cancer treatment. Fatigue can continue for months or, in some cases, years after treatment ends. Call Cancer Council 13 11 20, or ask your GP or occupational therapist for suggestions on how to manage fatigue.

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. 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.

Lymphoedema

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

Swelling usually occurs in a limb such as the arm or leg, but can also occur in the neck. People who have had surgery followed by radiotherapy 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.

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.

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.

In many hospitals, a lymphoedema practitioner will assess you before you have surgery. Some hospitals have specialist physiotherapists who can teach you simple exercises to reduce your risk of developing lymphoedema.

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. There are also outpatient and private lymphoedema practitioners.

Visit canceraustralia.gov.au/resources for a copy of Cancer Australia's booklet Lymphoedema – what you need to know. The Australasian Lymphology Association website has a directory of lymphoedema practitioners. Visit lymphoedema.org.au. You can also see Understanding Lymphoedema.

Key points

  • People with a head and neck cancer often experience side effects. Some effects go away after treatment; others need ongoing management and/or rehabilitation.
  • This may be for a few weeks or it may be long-term.
  • You may need therapy after surgery to learn how to speak or communicate in other ways.
  • A dry mouth is common if the salivary glands have been damaged or removed and no longer produce saliva. Mouth sores often occur during chemotherapy and radiotherapy. This can make it difficult to eat, drink or speak.
  • You may experience changes in taste, smell and appetite. These changes are usually temporary, but some people may lose their sense of smell permanently.
  • Difficulty swallowing is common and can be managed using exercises, medicines and diet.
  • Tube feeding may be useful if you have difficulties eating.
  • You may have a tracheostomy or stoma to help you breathe. Support is available.
  • Surgery may change the way you look. If you find this distressing or embarrassing, seek advice from a counsellor or psychologist.
  • Removal of an eye may be required if the cancer is in the eye socket. Changed vision should not prevent you playing sport or driving, but it may take time to get used to the change.
  • Removing lymph nodes may cause loss of nerve function. It can also cause swelling in the neck or a limb (lymphoedema). A lymphoedema practitioner can help improve swelling.

Reviewed by: A/Prof Ardalan Ebrahimi, Head and Neck Surgeon, Liverpool, Macquarie, St George Private and Sydney Southwest Private Hospitals, NSW; Jenne Farrant, Senior Physiotherapist, Intensive and Critical Care Unit, Flinders Medical Centre, SA; Merran Findlay AdvAPD Executive Research Lead – Cancer Nutrition, and Oncology Specialist Dietitian, Royal Prince Alfred Hospital, NSW; Dr Tsien Fua, Radiation Oncologist, Peter MacCallum Cancer Centre, VIC; Dr Craig Gedye, Medical Oncologist, Calvary Mater Hospital, Newcastle, and Conjoint Senior Lecturer, School of Biomedical Sciences and Pharmacy, The University of Newcastle, NSW; Jenny Holland, Head and Neck Oncology Nurse Consultant, Monash Health at Moorabbin Hospital, VIC; Dr Steven Kao, Medical Oncologist, Chris O’Brien Lifehouse, NSW; Cindy Lyons, Social Worker (Radiology), Gosford Hospital, NSW; Dr Elishka Marvan, Dental Oncologist, Peter MacCallum Cancer Centre, VIC; Dr Julia McLean, Speech Pathologist, St George Swallow Centre, St George Hospital, NSW; Rohan Miguel, Senior Physiotherapist, Community Services, Disability SA; Tracey Nicholls, Nurse Practitioner Ear Nose and Throat, Department of ENT Otolaryngology Head and Neck Surgery, Flinders Medical Centre, SA; Caitriona Nienaber, 13 11 20 Consultant, Cancer Council WA; Gail Williams, Consumer.
Updated: 01 May, 2017