Effects on eating and drinking after head and neck cancer treatment

Treatment can affect eating and drinking. Chewing and swallowing involve your lips, teeth, tongue and the muscles in your mouth, jaw and throat working together. Surgery or radiotherapy for a head and neck cancer can affect this. Tell your speech and language therapist (SLT), doctor or nurse about any eating or swallowing problems you have.

An SLT can do a swallowing test to show what happens when you swallow, so they know what the best treatment is likely to be. They can teach you exercises and techniques to help you chew and swallow and advise you on the best foods to eat.

A dietitian may give you high-calorie supplements if you have lost weight. They can also help with any taste changes you may have. Usually your sense of taste improves after treatment ends but this can take up to a year.

Some people have a feeding tube put in before, during or after treatment. The tube is usually only in for a few weeks or months. A small number of people will have a feeding tube permanently.

Eating and drinking

Surgery or radiotherapy for head and neck cancers can change how you eat and drink. Many people find that it gets easier to eat after treatment finishes. This is because side effects such as pain, swelling, feeling sick and tiredness are improving.

If you have eating difficulties, you will usually be supported by a speech and language therapist (SLT). They can teach you exercises and techniques to help you chew and swallow. You may also see a dietitian. They can advise you on how to increase the energy and nutrients in your diet. They may give you high-calorie supplements if you have lost weight.

We have information about what to eat to increase your weight after cancer treatment.

It can take a lot of effort and patience to overcome eating difficulties. If you have found eating difficult for a while, you may no longer associate food with pleasure. Taste changes may reduce your desire for food and affect your appetite.

Talk to your SLT if you feel this way. Some SLTs use different coping techniques, such as mindful eating, to help people regain pleasure in food. These techniques can help you to feel more relaxed around food and to find the things about eating you can still enjoy.

I’ve never had to worry about food because I’ve always been a healthy size. But now, I have a regimen where I have certain fortified drinks, and I have to have soup.

Sue


If you have a feeding tube

Some people have a feeding tube put in before, during or after treatment. A feeding tube may be placed directly through the stomach (a gastrostomy) or through the nose and into your stomach (nasogastric). The tube is usually temporary. It may be in for a few weeks or for several months or more after treatment. A small number of people will have a feeding tube permanently.

A dietitian will provide support while you have the feeding tube in. They can help you with any problems that you may have. You may also have a specialist nurse to support you.

Wherever possible you will be encouraged to eat and drink, even if you have a feeding tube in. This is important as it keeps the swallowing muscles working during radiotherapy and while you are recovering. If you have to stop eating and drinking for any reason, your SLT will help you to try food again. They will start you on the easiest texture for your mouth and throat. They will work with you to increase the amount and variety of textures you can manage.

You may have days when you cannot eat anything. It is common to have a setback before your eating begins to improve again. The feeding tube can normally be taken out when:

  • you have not needed it for a few weeks
  • you can get enough calories by eating and drinking normally.


What happens when you chew and swallow?

Chewing prepares food in the mouth to make it easier to swallow. You put food in your mouth and close your lips to keep it in. The tongue moves the food around in the mouth. Saliva moistens the food and your teeth break it down until it forms a soft, moist ball, that is ready to swallow. The moist ball of food is called a bolus.

Swallowing happens in three stages. These are shown in the following diagrams. We have used numbers to show what happens at each stage. The food bolus is shown as green in the diagrams. Eating difficulties can be caused by problems at one or more of these stages.

Mouth (oral) stage of swallowing

  1. When the food bolus (shown in green in the diagram) is ready to be swallowed, the tip of the tongue squeezes against the roof of the mouth. This moves the food to the back of the throat (pharynx).
  2. The soft palate moves up, closing the gap between the nose and mouth. This stops food from passing into the nose.

Mouth (oral) stage of swallowing
Mouth (oral) stage of swallowing

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Throat (pharyngeal) stage of swallowing

  1. As food moves into the throat, the muscles in the base of the tongue and throat (pharynx) squeeze together. This moves the bolus of food down.
  2. Your voice box (the larynx) lifts in your throat. A flap of tissue called the epiglottis moves to close the airway. This stops food going into the airways and lungs. The vocal cords close and the voice box moves upwards to further protect the airway. The gullet (oesophagus) then opens.

Throat (pharyngeal) stage of swallowing
Throat (pharyngeal) stage of swallowing

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Gullet (oesophageal) stage of swallowing

  1. Muscles in the gullet squeeze and relax, pushing food down towards the stomach.

Gullet (oesophageal) stage of swallowing
Gullet (oesophageal) stage of swallowing

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How treatments can affect chewing and swallowing

Surgery for mouth cancer can affect chewing and the mouth stage of swallowing. If only a small amount of tissue is removed, the effect on chewing may be small. You will probably adjust quite quickly. If a lot of tissue is removed, or if some or all of the tongue or soft palate is removed, you may have longer-lasting changes. If you had teeth removed as part of your treatment, your ability to grind food during chewing may change. This can also happen if you have dentures that no longer fit.

Muscles and nerves that control the lips, tongue or other parts of your mouth can be affected by surgery or radiotherapy. This can make it difficult to control food and fluid in your mouth. It may also affect your ability to sense where food is in your mouth.

Jaw stiffness or a dry mouth also cause difficulties with chewing and swallowing.

Surgery to the larynx mainly affects the throat stage of swallowing. Swelling in the throat caused by a build-up of fluid in the tissues (lymphoedema) can also affect swallowing.

Radiotherapy may make muscles and tissues in the throat and gullet weaker and less stretchy. This can make it harder to swallow some types of food. It can also cause some foods to stick in the throat. If nerves that control the muscles in the gullet are affected, this can also weaken the muscles. This means they are less able to move food downwards.

The upper part of the gullet may be narrower after radiotherapy. It may also be harder for you to know whether there is food in the gullet.

Problems with swallowing can cause food or drink to go down the wrong way into the windpipe. This is called aspiration. It can cause choking and may lead to chest infections.

Sometimes swallowing problems develop months or years after radiotherapy. This can happen if scar tissue in the throat makes the swallowing muscles tight and hard. This is called fibrosis.

Tell your speech and language therapist (SLT), specialist nurse or doctor if you have difficulty swallowing or if you are experiencing:

  • drooling or dribbling when eating
  • food coming down your nose
  • food getting trapped in one side of your mouth
  • biting your tongue or the inside of your cheeks
  • a feeling that you have too much saliva
  • food sticking in your throat
  • choking or coughing when eating or drinking
  • a wet, or gurgly-sounding voice
  • repeated chest infections
  • weight loss.


Help with chewing

You may be able to have treatment to help with chewing. The type of treatment you have depends on what is causing the problems. Problems could be caused by:

  • a change in the shape of your mouth
  • tooth loss
  • jaw stiffness
  • dry mouth
  • loss of sensation.

It is important you are assessed by a specialist. This could be a surgeon, a restorative dentist or a speech and language therapist (SLT).

Restorative dentistry

Changes to your bite or to the tissues inside your mouth may affect your ability to eat or speak. Restorative dentists may be able to help.

After surgery to the roof of the mouth (maxilla), some people have an opening between the roof of the mouth and the nose. You may be able to have restorative surgery to help with this. A restorative dentist can cover the opening with a special type of dental plate called an obturator. This stops food, fluid and air passing between the nose and mouth. Some obturators have a speech bubble at the back to help with speaking.

If you need an obturator, you will usually be fitted with a temporary one to begin with. This is because as the tissues in the mouth heal after surgery, they get smaller until they reach their final size and shape. This can take six months or longer. Once your mouth has healed into its final shape, your dentist will make you a permanent obturator.

It is important to let your dentist know if you have any problems with the fit of the obturator. As the tissues in your mouth settle, your hospital dentist may need to adjust the fit from time to time.

Exercises to improve chewing

Your SLT will assess your chewing to find out which difficulties you have. They may arrange for you to have tests to help find out the best way to treat any problems.

They may give you exercises to strengthen your lips, tongue and other muscles in your mouth. There are also exercises to help stimulate parts of the mouth that have lost sensation.

Your SLT may give you chewing aids such as Chewy Tubes® to help you practise biting and chewing. Or they may give you spoon-shaped devices such as Ora-Light® to exercise the lips and tongue.

They may also advise you on changes you can make to the food you eat. For example, this could mean choosing soft, moist foods. You may find it easier to chew with a larger or smaller amount of food in your mouth. This depends on why you are finding it difficult to chew.


Help with swallowing

The type of treatment you can have depends on which parts of the swallowing process you are having problems with. Your speech and language therapist (SLT) will do a clinical assessment of your swallowing. You may need to have a swallowing test to show what happens when you swallow. There are two tests that can be used to assess swallowing. These are:

  • videofluoroscopy (VF)
  • fibreoptic endoscopic evaluation of swallowing (FEES).

Your SLT will decide which test is best for you.

Videofluoroscopy (VF)

A VF is a special x-ray test which shows what happens in your mouth and throat when you swallow. It can show:

  • if anything gets stuck in your throat
  • if any food or drink goes down the wrong way.

This helps your SLT see how they can make swallowing safer and easier for you.

This test is done in the x-ray department by a radiographer and your SLT. They will ask you to swallow different foods of different textures. This might be:

  • liquid or food with a semi-solid texture, like yoghurt
  • food with a solid texture, like a biscuit.

A special substance is added to the food to make it show up on the x-ray. They may also ask you to try different techniques to see if they help when you swallow. The test takes about 30 minutes and is painless. The x-rays are recorded on video or DVD.

Fiberoptic endoscopic evaluation of swallowing (FEES)

A FEES is another test to show what happens in your mouth and throat when you swallow. Your SLT passes a thin, flexible tube through the nose to look at the back of your throat. The tube contains a small camera which records your swallowing while you eat and drink. The test takes about 10 to 20 minutes.

After the tests

Your SLT will meet with you to discuss the results of the tests. The tests help them to recommend exercises and other ways to make swallowing easier for you. They will also advise you on what types of food you can eat. For example, moister foods may be easier to swallow. It may help to bring a partner, family member or friend with you when you see your SLT. This can help them to support you at home when you are eating. They can learn about exercises and techniques you need to use or changes to food you may need to make.

Your SLT may suggest:

  • how to position your head and neck when swallowing
  • swallowing techniques
  • exercises to strengthen swallowing muscles
  • eating and drinking thinner or thicker foods or liquids
  • changes to the way you prepare and cook food
  • taking time to eat and swallow
  • coughing to clear your airway after you swallow
  • coping strategies to help you adjust to changes to eating and drinking.

If your SLT gives you swallowing exercises, you will need to do them regularly to get the most benefit. Apps such as iSwallow® can help guide you through swallowing exercises, remind you when to do them and keep track of how often you do them. Always talk to your SLT before using any apps. You can download the apps, but you may need to check whether it works on your mobile device.

Stretching the gullet (oesophagus)

Radiotherapy to the head and neck area can cause the top of your gullet to narrow. This may be shown on a videofluoroscopy. You may be offered a quick procedure to make swallowing easier. A doctor puts a tube down into the gullet to stretch it. This makes more space for food and fluid to pass through. You can have this done as an outpatient.

You usually have a local anaesthetic for this procedure. But it is sometimes done under general anaesthetic. Your doctor can tell you what the possible benefits and risks are.

I had a speech therapist who checked on whether I could swallow, whether I couldn’t swallow and how much I could swallow.

Gary


Taste changes

Radiotherapy to your mouth can affect your sense of taste. A lack of saliva can also affect your taste buds. Some treatments can change your sense of smell, which can affect taste.

Foods may taste the same or you may dislike the taste of certain foods. Some people can taste the first few bites of food and then find that the taste gets weaker. These changes can lower your desire for food and affect your appetite.

Usually, your sense of taste gradually improves after treatment ends. Sometimes it can take a year or more. If you have taste changes, tell your doctor, dietitian or specialist nurse. They can offer advice and support.

Here are some tips for coping with taste changes:

  • Eat the food and drinks that you enjoy the most.
  • If a food did not taste very nice, try it again after a few weeks. Your sense of taste may improve.
  • Use your other senses to enjoy food, for example by making your food look and smell as appealing as possible.
  • Use marinades or strongly flavoured seasonings and herbs to flavour your food. Only use these once your mouth is no longer sore after treatment.
  • Try marinating meat in fruit juices.
  • Try cold foods. Some people find that cold foods taste better than hot foods. Try serving cold meats with pickle or chutney.
  • Try sweet foods. Some people find they can taste sweet foods better. But be careful with sugary foods as they can cause serious tooth decay if you have less saliva after radiotherapy.
  • Use sauces and oils to flavour and moisten food.

I do have some long-lasting side-effects. My taste buds have never quite recovered. I can’t really taste sweetness anymore, so most puddings don't taste of much.

James


Acid reflux

Acid reflux is caused by acid in the stomach coming up into the throat or gullet. It is quite common after surgery or radiotherapy for head and neck cancers. Acid reflux can cause symptoms such as:

  • heartburn
  • coughing
  • a sore throat
  • the sensation of having something in the throat
  • a hoarse voice.

You should always tell your doctor if you have any of these symptoms.

Saliva helps to neutralise stomach acids. So acid reflux may be more noticeable if your mouth is dry. It can usually be treated with drugs to reduce or neutralise acid in the stomach.

Reflux is often worse when you are lying down. If you notice this, try not to eat or drink anything, or have caffeine for three hours before you go to bed. For example, you should avoid coffee, tea and chocolate. It may also help to raise your head with an extra pillow so that you are not lying flat.

Eating smaller meals often can also help reduce acid reflux. If you are having food through a tube, having it at a slower rate can help.

The most common question I’m asked is “When will I be able to taste food again?” I try to reassure them that their taste buds could come back. I can taste everything now that I could before.

Murray, hospital buddy for head and neck cancer patients


Eating and socialising

Many social activities involve eating and drinking. If you have difficulty chewing or swallowing, you may feel anxious or unsure about eating in front of other people. Everyone has their own way of dealing with these issues.

If you feel self-conscious about eating in front of others, it may help to get used to eating at home with people you know first. When you feel ready to try eating away from home, do something simple to start with such as going for an ice cream. You can start to do other things as your confidence grows.

If you take a long time to eat, try eating smaller portions but increasing the number of times you eat each day. Eating small portions means you need to concentrate on eating for a shorter amount of time, so you are less likely to get tired when eating.

If you are worried about keeping family or friends waiting while you eat, talk to them about this. They can reassure you that they do not mind you taking longer. You will probably find they are more relaxed about it than you think.

If you go to someone’s house for a meal, try not to worry about telling them about your dietary needs. People often make allowances for guests, for example if someone does not eat meat or cannot eat gluten. Tell your host in advance if you need food of a certain texture or thickness or if you cannot eat spicy food. This helps them to prepare food that suits you. Or you can ask if you can bring your own food to be heated up.

If you are going out to eat in a restaurant, try to look at the menu before you go. You can find out if they offer meals that suit you or that can be adapted for you. Try contacting them in advance to ask if they can make changes to a dish. For example, you could ask them to add extra gravy, mayonnaise or butter, leave out certain spices or blend your food.

If you take part of your meal as liquid supplements, ask the restaurant if they can provide you with a cup. This means you can take a liquid supplement meal and still order something from the menu.

People who do not know you may ask about your eating difficulties when they first have a meal with you. You may find it helpful to think about what you want to say beforehand. Or you might decide you do not want to explain it at all. You could ask the people you know to tell other guests in advance and add that you would prefer not to talk about it. Do whatever makes you feel comfortable.

Not all of us are good at asking for what we need. If you find it difficult, you may find the information about being assertive helpful.