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Living with head and neck cancers

Quality of Life

Recovery is different for everyone and it depends on the treatment one has. It will usually take some time to recover from treatment.

There may be physical changes in the way one looks, and possibly changes in some of the most basic activities of daily life such as the way one speaks, or what one can eat.

There will also be emotional changes to deal with so it's important to give oneself time to adjust.

How you will look after treatment for head and neck cancer

It can be distressing if you need surgery to part of your head or neck. When surgery affects your looks, it can alter the way that you think of yourself as a person and can be very difficult to deal with.

Body image

It's now much less common for people to be disfigured by their surgery, even if they need very extensive treatment. Scars from surgery often lie either in the neck or in skin creases on the face and are barely visible. The underlying bone structures can be built up to a near-normal shape using bone grafts from other places in the body. However, if the operation affects delicate structures such as the nose or lips, your appearance will be altered.

It takes time to adjust to a sudden change in appearance, even when it's only small.

Although we live in a society that puts a lot of emphasis on appearance, we all know that the relationships that are important to us, with family and friends, are not just based on the way we look. Nevertheless, it's true that how you feel about the way you look is an important part of self-esteem.

How we look is one of the ways that we define ourselves. Because of this, changes to your appearance as a result of surgery may affect, in some ways, your sense of who you are.

With any change in appearance, it's quite normal to worry about feeling rejected, both socially and possibly even by your partner. There are many reasons for this concern. Our faces play a big part in communication. Watching facial expression, eye contact and nodding, for example, are all ways of gathering information about what is being said. Because of this we look intently at each other when we are speaking. Usually, we accept this without thinking about it, but when your appearance has changed, it can be unsettling to be aware of how much people are looking at your face.

The more you are at ease with the changes yourself, the easier you will find it to deal with the reactions of others. Your family and friends may feel unsure about what to say and how to behave. They may also worry about saying the wrong thing.

The medical professionals looking after you will be able to give them advice about what to expect and how to support you. They may also find it helpful to read our booklet on talking to someone with cancer, which has tips on how to talk to and support a person with cancer.

Ways of coping with your changed appearance

It's very important to have a good idea of what to expect before you have your operation. Ask your doctor to be honest about the physical effects of the surgery, and try to discuss them openly with people who are close to you. If you have a partner, it may help for them to see the doctor or nurse with you, so that you can both be fully aware of what to expect afterwards.

It may help to talk to someone who has had a similar experience. Your doctor may be able to put you in touch with other people who can talk to you about how the surgery has affected them, and give you some idea about how it might affect your life. You may also pick up good tips on how to cope with the changes.

When you come round from the operation you may be anxious to know what you look like, but at the same time frightened of what you might see. Once you have recovered physically from the operation, perhaps after 7-8 days, it's a good idea to look at your face for the first time with a doctor or nurse. They will be able to explain the healing process. Even if you had a good idea of what to expect, you may still feel shocked and upset when you first see your face. If your face feels different - for example, numb or swollen - this can add to the shock.

You may be extremely upset and perhaps wish that you had never agreed to the operation. You may also feel angry. Give yourself some time. These are very strong emotions and part of you needs to grieve for your previous appearance even as you look ahead to the future.

Remember that the changes to your face will be at their worst in the days and weeks immediately after the operation. Any swelling or bruising will disappear as you heal, and scars will gradually fade over time. The hospital staff will help you, and you can get advice and support from support organizations which help people to cope with a changed appearance. Even if it's difficult, it's best not to avoid looking at your face. Some people find that it helps to change their own dressings at this stage.

Camouflage make-up

If parts of the skin from your face or neck have to be removed completely, they can be replaced, but the skin colour will not match the surrounding skin and the scars may be visible. However, there is a way to reduce the differences of skin colour and disguise the appearance of scar tissue. Camouflage make-up consists of specially designed creams, and is available to suit all skin types and colours in both men and women.

Some types of camouflage make-up can be applied to facial prostheses to improve the colour match of the skin. This can be useful in the summer when skin tone changes. If the prosthesis needs colouring it should be taken back to the person or organisation that supplied it.

Meeting other people

As you and the people close to you become more familiar with your changed appearance, you may want to think about seeing other people and going back to work. If you avoid social situations, you may find yourself wanting to go out less and less. The longer you leave it, the harder it may be. It's best to start by going somewhere familiar with someone else to give you support.

Be prepared for mixed reactions. You may find that people take far less notice of you than you expected. But if people are staring, don't assume that they are making judgements about you. We all look at each other, and hiding your face will often draw attention to you. On the other hand, some people may seem intrusive and may make remarks. Small children are often openly curious and may ask why you look different. Decide in advance how you will answer. A simple sentence saying that you have had an operation will be enough. You don't have to go into the details.

Dealing effectively with other people often involves taking the first step by putting them at ease. They will soon respond to you and not to your appearance. Coping successfully with these sorts of social situations will help to build your self- confidence, and this will increase as you gradually take up your normal activities. These skills are not difficult to learn, but simply need practice. In time you will gain the confidence to manage social situations in an effective way.

Focus on things that make you feel good about yourself or that help you to accept the change in how you look. Remember that personality, interests and a sense of humour are more important than appearance to the people who know you.

These are the qualities that your friends and family value, and these things haven't changed. People who are close to you are likely to be less concerned about what you look like and more about how the change is affecting you. Being open about your fears of rejection can help to overcome any initial awkwardness with others. Given the chance, most people will welcome the opportunity to reassure you of their continuing love for you.

Intimate relationships

Treatment for head and neck cancers can also affect the way that you feel about yourself in a sexual way. This may leave you feeling isolated. Your partner may also need time to adjust. Again, keeping communication open and talking about how you both feel is essential to overcoming any fears or worries that you may have.

Help and support

Cancers of the head and neck may bring with them not only the shock of having cancer, but the added trial of coping with major changes to the way you look, speak and feel about yourself as a result of treatment. It's only natural to feel sad and upset and sometimes these emotions can be overwhelming.

There are many organisations that can help you. Your doctor can refer you to a counsellor, who can listen to your problems and give information about how other people have managed in a similar situation. Some support organisations provide counselling.

We have a booklet on the emotional effects of cancer, which you may find helpful.

Joining a group especially for people with facial disfigurements may help take away your feeling of having to cope alone, and will put you in touch with people who really understand what you are going through.

Changes to eating after treatment for head and neck cancer

Surgery and radiotherapy to the head and neck area may interfere with some of the actions or movements of the mouth, tongue or throat, making it more difficult to eat or drink.

Eating is an everyday activity that we rarely stop to think about. In fact, it's a very complex process with a precise sequence of actions, each needing a high level of muscular control.

After treatment, your doctor will want to make sure that food is going down into the gullet and not into your lungs, which would make you cough or choke.

Assessing your swallowing

If your doctor is concerned that food may be going down the wrong way, they will arrange for your swallowing to be assessed by a speech and language therapist. The therapist may arrange a special x-ray examination of your swallowing called a videofluoroscopy. This is completely painless. You will be asked to swallow different types of food, from liquid to semi-solid (like yoghurt), to solid (like a biscuit). A special substance is added to the food to make it show up on the x-ray film.

This test is carried out in a special room by a radiologist and the speech therapist, and is recorded on video.

If the results of the videoflouroscopy show that food or liquid is getting into the lungs, you may need to be fed directly into the stomach through a tube. Sometimes this may need to be permanent, but for most people it is only temporary until they re-learn to swallow with the help of exercises taught by the speech and language therapist. You will also be given advice on the type of food to eat - for example, drinks can be thickened to allow them to be swallowed safely.

The tissue will heal once your treatment is over and any swelling will go down gradually. Your swallowing will slowly improve, although this may take a long time and may never be quite the same as before. Your speech and language therapist will help you. They will assess your eating and swallowing at every stage and advise you on what to do.

It may be that you lose interest in food because your treatment has affected the way that things smell and taste. However, it's important to eat well during and after your cancer treatment. This means getting enough calories and protein to prevent weight loss, increase your strength and rebuild normal tissues. Your dietitian will help you choose the right kinds of foods.

Some people find that after their treatment they can only eat slowly and they experience drooling (saliva drips outside the mouth). These changes may make you feel embarrassed and frustrated and you may find it hard to eat with others. It's important to talk with your family and friends about how you are feeling so that they can help. You can also talk to your specialist nurse - they will understand what you are going through and may be able to put you in touch with other people who have experienced similar difficulties.

Ideas for food and eating

Some suggestions about food are offered below, and our booklet on diet and cancer has helpful tips on how to eat well when you have a sore or dry mouth.

  • Try different types of food or ways of preparing food.
  • Choose foods that look and smell good to you.
  • Try to choose high-calorie foods that contain a lot of protein (such as meat, fish or cheese).
  • Cook with butter or oil.
  • Help to increase the flavour of food by marinating, or using strongly flavoured seasonings or herbs.
  • If your mouth is sore, or swallowing is difficult, try soft foods such as milkshakes, custards, scrambled eggs or mashed vegetables. Avoid foods that may irritate, such as spicy/salty foods, citrus fruit or drinks (orange, lemon and lime), and tomato sauces.
  • Mix food with sauces to ease swallowing.
  • Try to eat several small meals or snacks during the day - this may work better for you than having three large meals.

Changes to speech after treatment for head and neck cancer

Any change to your lips, teeth, tongue or soft palate is likely to make your speech sound different.

For some people, a change in voice will only be a temporary problem and their speech will return to near normal as tissues heal. For others it will be a greater problem and will cause permanent changes to the way they speak.

This may mean that you have difficulty making one or two specific sounds or saying some words. It may sometimes be more severe, so people can't easily understand what you are trying to say.

Losing the ability to talk, even temporarily, can be frightening and frustrating. However, a speech and language therapist will be involved in your recovery from an early stage and will be able to give support and helpful advice.

Speech therapy

Speech therapy can help you learn to communicate in the clearest and most effective way. Therapy usually begins as soon as possible after surgery and normally continues after you go home. It's likely to involve exercises to improve the range and strength of mouth and tongue movements, or to find new ways to produce speech sounds. If you wear dentures, these may need to be changed. Sometimes, an individually designed prosthesis needs to be made to improve your speech.

There are also special aids that your speech and language therapist will discuss with you if necessary.

Adjusting to your changed speech or voice will take time for you, and your family and friends. The reactions of strangers may be harder to get used to, but will get easier. It often helps if you can put your listener at ease by simply explaining that you have had an operation that has made it difficult for you to talk.

Changes to hearing after treatment for head and neck cancer

Computer technology has made great advances in this area. If you have a problem with hearing after your cancer and treatment, there are cochlear implants (digital hearing aids that can recognise speech) and miniature hearing aids that can help.

Sometimes the small tube between the ear and the throat (the Eustachian tube) can become blocked after treatment.

The Eustachian tube helps to regulate air pressure in the ear, and if blocked it can affect hearing. If this happens a simple operation to put in a tiny tube (grommet) can help the ear to drain and improve hearing. This is usually done under a local anaesthetic.

Follow-up after treatment for head and neck cancers

After your treatment is completed, you will have regular check-ups. These are very important for your surgeon or oncologist to monitor your progress.

You may have scans from time to time but the most important part of your follow-up will be your specialist's examination of your head and neck.

If you have any problems or notice any new symptoms in between these times, you should let your GP, specialist or specialist nurse know as soon as possible.

The check-ups will often continue for several years, frequently at first, then less so. This can make it difficult to put the experience of cancer behind you.

It's important to have a nutritious and well-balanced diet with plenty of fresh fruit and vegetables, even if your appetite and interest in food have been reduced. Your dietitian will be able to advise you on ways to eat well and can help with any problems you may have.

Our booklet on adjusting to life after cancer gives useful advice on how to keep healthy and deal with these changes.

Smoking and alcohol

If you are a smoker, it's important to try to give up. Smoking is the main cause of head and neck cancers and continuing to smoke puts you at greater risk of developing a second cancer. It may also significantly reduce the effectiveness of your current treatment, worsen the side effects and increase the risk of your cancer coming back. Giving up smoking can be very difficult, especially at times of stress.

Cutting back on alcohol can also help. If you can't stop drinking alcohol completely, it's best to avoid spirits if you can.

If your head and neck cancer comes back

For many people with head and neck cancer, their cancer may be cured. However, for some people the cancer will come back some time after the initial treatment.

If this happens, your doctor will explain the treatments available and what these are likely to achieve. In some cases it may be possible to remove the cancer. Radiotherapy may be given if it has not been used before. In other situations, chemotherapy may be offered to try to control the cancer for as long as possible.

Learning that your cancer has come back can feel devastating. Our booklet on coping with advanced cancer may be helpful.

Living with and after cancer

Cancer can affect many areas of your life such as your finances, work, your emotions and relationships. Find information and advice about what the effects might be, how to deal with them and how we can help.

Emotional effects

Information on the emotions you might experience as a result of your cancer diagnosis, ways that you might manage them and other sources of support.

Relationships and communication

Advice on how to talk to other people, talking to children, relationships and sexuality.

NOTE: JASCAP has booklets on the above subjects.