Managing side effects of head and neck cancers

Head and neck cancer, and its treatment, can cause many side effects that may be temporary or permanent. This chapter lists some possible side effects and ways to manage them. Cancer Council Helpline 13 11 20 has more information about side effects caused by chemotherapy and radiotherapy, ways to cope with changes in your eating, and managing pain.

Dry mouth

A dry mouth can make chewing difficult and increases your risk of developing cavities in your teeth.

Tips

  • Speak to your dentist about an oral care plan. Regular dentist visits and frequent, correct oral care at home can reduce dental complications.
  • Ask your medical team, dentist or pharmacist about using mouth lubricants and mouthwashes.
  • Cut food into small pieces.
  • Have frequent sips of fluid with your meals.
  • Avoid dry, hard lollies, crisps and biscuits if your mouth is sore as well as dry.
  • Avoid fluids that are dehydrating, e.g. alcohol or highly caffeinated drinks.
  • Try sugar-free pastilles, mints or jubes to increase saliva.
  • If your mouth is not sore, try tangy foods, such as lemons or fruit, to stimulate saliva.
  • Make soft, moist meals, e.g. add gravies or sauces, use minced meat, have soups and casseroles, and add custard or cream to desserts.
  • Sip water frequently; carry a water bottle with you.

Mouth sores and ulcers

Mouth sores are common during chemotherapy and radiotherapy treatment. The sores, which can form on any soft tissue in your mouth, make it difficult to eat, talk and swallow.

If you have mouth sores, your doctor can treat them by giving you medicines that reduce the pain when you eat, drink or speak. You may also use pain-killers that can be applied directly to the mouth sores to numb them.

Tips

  • Avoid foods that sting your mouth, such as vinegar, spices, salty foods, alcohol, very hot or very cold foods and drinks, and citrus or tomato-based food or juice.
  • Drink diluted non-citrus fruit juices, such as pear or mango.
  • Avoid dry, rough or crunchy foods such as chips, nuts, crackers or toast.
  • Chop or blend food, or add stock, milk, sauce or gravy so it’s easier to swallow.
  • Rinse your mouth and throat with warm saltwater or a mix of 1 tsp salt, 1 tsp baking soda and 4 cups of water.
  • Use a straw for drinking if you have mouth ulcers.
  • Talk to your doctor about mouthwashes or medication to relieve ulcers or thrush (a white coating in the mouth) and to keep your mouth fresh. Don’t use mouthwashes with alcohol, as they may irritate ulcers.
  • Use a soft-bristled toothbrush and gently brush your teeth after meals and before bed. Replace your toothbrush regularly to reduce infections.
  • Tell your doctor or dietitian if you have ongoing or severe difficulty swallowing.

Changes in taste, smell and appetite

Treatment can affect your sense of taste and smell. It can take several months for your sense of taste to return to normal. You may never regain your full sense of smell. Taste changes may make you lose your appetite, or this can happen as a result of stress. Try  to find ways to make mealtimes more appealing.

Tips

  • Marinate meat, fish, poultry or tofu to add extra flavour.
  • Freshen your mouth with sugar-free mints or chewing 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.
  • Add lemon, ginger and vinegar to your cooking to stimulate your digestive juices and appetite. These ingredients also help to add flavour to your food.
  • Use salt, lemon juice or coffee powder if food is too sweet; try sugar or honey if food tastes metallic or salty.
  • You can add flavour to food with spices, garlic, herbs, cheese or bacon.
  • Use a drinking straw to bypass your tastebuds.
  • Ask your family or friends to prepare meals for you, or try pre-cooked  frozen meals if you don’t feel like cooking or eating.
  • Eat small meals and snacks throughout the day.
  • If you lose your sense of smell, take precautions such as installing smoke detectors in your home and checking the use-by dates of foods because you may not be able to smell smoke or foods that are off.

Nausea and vomiting

Feeling sick (nausea) and vomiting are common side effects of chemotherapy. Some people feel nauseous before, during or  after treatment.

Tips

  • Eat small meals often – not eating can make nausea worse.
  • Try sour or salty foods such as dry savoury biscuits and potato crisps. Sugar-free fizzy drinks are also good.
  • Try a small snack such as dry toast if you wake up nauseous.
  • Eat cold foods, which may be easier to manage than hot, fried, greasy or spicy foods, e.g. sandwiches, cold meats, salads and cold milk puddings.
  • Eat or drink ginger-based foods, such as candied ginger, lemon and ginger tea, dry ginger ale or ginger beer.
  • Talk to your doctor about medication to ease ongoing nausea. If the medication is not helpful, ask your doctor about trying a new type.

Difficulty swallowing

Many people with head and neck cancer have trouble swallowing (dysphagia) before or after treatment. Radiotherapy can cause dryness, pain, and changes to the strength of the muscles used in swallowing. Surgery may also reduce your ability to swallow.

If swallowing is painful, ask your doctor about taking pain-killers. You may also be able to use other types of soothing agents to prevent your mouth and throat from becoming too irritated.

A speech pathologist can assess how you swallow and suggest changes to your diet and swallowing action to help reduce any discomfort or concerns of food going down the wrong way (aspiration). If these problems persist, you may need tube feeding.

See the Laryngectomee Association of NSW’s book for swallowing and chewing difficulties at www.stilltalking.org/#cookbook.

Weight loss

The side effects may cause you to lose weight because you may find it difficult to eat. It is important to  keep your body as well nourished as possible. This is because significant weight loss can lead to reduced energy and strength, and reduced quality of life. It is also important to maintain a good weight during treatment because a change in weight can influence  the accuracy of radiotherapy or the dose of chemotherapy.

Tips

  • Eat small meals frequently.
  • Try to eat and drink nourishing meals or snacks, e.g. drink milk rather than cordial; eat biscuits rather than lollies.
  • To gain weight, add extra ingredients to recipes, such as whey powder to full-cream milk, other dairy products (sour cream, butter, mayonnaise or cheese), oil, eggs, honey, sugar or golden syrup.
  • Ask your dietitian about nutritional supplement drinks, which may help you gain weight.

Tube feeding

After treatment many people need a temporary feeding tube. In some cases, people experience long-term eating difficulties. For example, they may be at risk of aspirating food or drink into their lungs and need a different way of getting nutrition. Tube feeding (also called enteral feeding) can help you stay well-nourished if you are having difficulties eating.

If the treatment team thinks you will need assistance with your nutrition during treatment, they will recommend a feeding tube is placed before treatment. This will be discussed with you.

If you have a long-term feeding tube, flexible tubing may protrude 8-10 cm from your abdomen. Your health care team will advise you on how to keep the tube clean to prevent wear and leakage, ways to prevent blockages, and when the tubing needs to be replaced. A dietitian will tell you what kind of feeding formula and the amount you need to use.

Tube feeding helps control your food intake (nutrition), fluid intake (hydration) and your overall wellbeing. Many people find that having a feeding tube eases the discomfort of eating and the pressure of having to eat meals. If medications can’t be swallowed, these can also be given through the feeding tube.

However, having a feeding tube inserted is a significant change, and it is common to feel upset about it. Talking to your family, a counsellor, dietitian or nurse may help you adjust to the change.

 Head and Neck temporary nasogastric tube

Osteoradionecrosis

Radiotherapy to the head and neck can affect your teeth and bones, possibly causing osteoradionecrosis  (ORN).

In most cases, your health care team will include a dentist who will take measures to prevent damage before treatment begins.

If you do get ORN, your doctors may treat it with surgery, antibiotics or hyperbaric oxygen treatment. This delivers concentrated oxygen to the bone to help it heal. For this treatment, you will sit or lie in a pressurised chamber while oxygen is pumped in for you to breathe.

Changes to speech

Communication is one of the most important parts of life. Most people take their ability to communicate for granted. If you lose your voice or your ability to speak clearly, it is natural to feel distressed, frustrated and angry at times.

People around you may need to learn new ways to communicate with you. It will probably help them to take more time to listen carefully. If your voice or speech has changed, some people might pretend to understand what you’re saying so they don’t upset you or because they’re embarrassed to say they don’t understand. It can be frustrating when people aren’t prepared to take extra time to communicate, and you may feel uncomfortable or alienated.

It is important for your family and friends to provide you with understanding, sympathy and support.

Loss of speech

Some people lose the ability to speak clearly or produce voice due to surgery to their mouth or the removal of their voice box. Immediately after surgery, you can communicate in other ways.

You may find it helpful to:

  • gesture, point, nod, smile, or mouth words
  • ring a bell to call people
  • keep pads of paper and pens handy
  • write on a whiteboard or point to a board with pictures or words
  • use a computer, mobile phone or other device to type messages
  • use the National Relay Service
  • join an online support group such as Cancer Council’s www.cancerconnections.com.au.

You will work with a speech pathologist to improve your speech and teach you strategies for communicating with your family and friends. Although this can
be challenging sometimes, most people who have had surgery are able to learn techniques to talk again. A counsellor or social worker can help you address any problems or frustrations.

Having speech therapy

If you are learning to talk after a total laryngectomy, there are three main methods your speech pathologist may try with you:

  • Oesophageal speech – You swallow air and force it up through your oesophagus to produce a voice like a low- pitched burp. Most people find this technique difficult to learn.
  • Tracheoesophageal speech – Your surgeon may create a puncture between your trachea and oesophagus during the laryngectomy or later on. Your speech pathologist can then fit you with a voice prosthesis (or valve) to direct air from your  trachea into the oesophagus. This creates a low-pitch, “˜throaty’   voice.
  • Mechanical speech – A battery-powered device (such as an electrolarynx) creates an external vibrating sound when it is held against the neck or cheek or placed inside the mouth. You press a button attached to the device when you want to speak.

Whichever method you choose, talking will take time and practice. You will also have to get used to the way your new voice sounds. If you are feeling self-conscious about the change, counselling may help.

Tracheostomy

A tracheostomy is an operation to create an artificial opening (stoma) through the neck into the windpipe (trachea). This opening, which looks like a small hole, allows you to breathe. If you are having another surgical procedure, the tracheostomy is usually done at the same time under general anaesthetic. The stoma may be temporary or permanent, and it may have tubes inserted in it.

  • When laryngeal or pharyngeal cancer becomes advanced, it can block your airways. You may have a tracheostomy before treatment.
  • If you are recovering from surgery that has caused a swollen mouth or has interfered with breathing through the upper airways, you will probably have a temporary stoma for a few weeks.
  • If you have had a total laryngectomy, you will learn how to breathe through a permanent stoma.

 Head and Neck temporary tracheostomy

Tracheostomy tube

If you have a tracheostomy tube, your trachea is still connected with your upper airway. A plastic outer tube is inserted in the hole to keep it from closing. An inner tube can be removed for cleaning.

The tubes can block without regular cleaning and suctioning. Your health care team will do this, and they will show you how to keep the tubes clean. They will also advise what products to use to keep your airway warm and moist, which is very important.

It is unlikely that you will be able to speak at first, because for most patients, air will not pass up through the tube into the voice box and mouth. However, some patients who have a small tube or a tube with a hole (fenestrated tracheostomy tube) will be able to speak. Your nursing staff or speech pathologist will teach you how to achieve voice with these tubes.

After a recovery period, the tracheostomy tube will probably be removed and the stoma will close up. At first your voice may be weak and breathy, but it should return to normal once the stoma has healed.

Occasionally, people need a tracheostomy tube for several weeks during radiotherapy or on a permanent basis. Your health care team will discuss this with you if needed.

Stoma

People who have a total laryngectomy breathe through a permanent stoma. During the laryngectomy, the trachea is stitched permanently to an opening at the front of the neck and is no longer connected to the mouth and nose in the upper airway.

You may have a tube inserted into the stoma immediately after the surgery. This makes sure the stoma stays the same size and keeps your airway open for breathing while you are healing. Your nurses will teach you and your carers how to clean the tube. You will probably be able to remove the tube during the day, and eventually you probably won’t need it at all. Your speech pathologist or nurse will show you products to cover the stoma and provide heat and moisture for the trachea.

Feeling embarrassed or self-conscious about the way the stoma makes you look and speak is not unusual. Addressing concerns may help you come to terms with the change.

For more information about stomas, see the Laryngectomee Association of NSW‘s booklet You Can Say That Again, available from Cancer Council Helpline 13 11 20.

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