Coping with mouth and oropharyngeal cancer

Coming to terms with the changes caused by a diagnosis of mouth or oropharyngeal cancer and its treatment can be hard. But there are people who can support you and things you can do to help you cope.

You might have several different feelings when you are told you have cancer.  And you might have changes in your appearance after surgery. This can affect your self esteem. 

Talking to your friends and relatives about your cancer can help and support you. You can help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

Your feelings

You may have several different feelings when you are told you have cancer. You may feel shocked and upset. You might also feel:

• numb
• frightened and uncertain
• confused
• angry and resentful
• guilty

You may feel some or all of these feelings. Or you may feel totally different. Everyone reacts in their own way. Sometimes it's hard to take in the fact that you have cancer at all.

Feelings are a natural part of coming to terms with cancer. All sorts of feelings are likely to come and go.

Helping yourself

You may be more able to cope and make decisions if you have information about your type of cancer and its treatment. Information helps you to know what to expect.

Taking in information can be difficult, especially when you have just been diagnosed. Make a list of questions before you see your doctor. Ask if you can take someone with you. Having someone can help to remind you what you want to ask and help remember the answers.

Ask your doctors and nurses to explain things again if you need them to.

Remember that you don’t have to sort everything out at once. It might take some time to deal with each issue. Ask for help if you need it.

Talking to other people

Talking to your friends and relatives about your cancer can help and support you. But some people are scared of the emotions this could bring up and won’t want to talk. They might worry that you won't be able to cope with your situation or be afraid they will say the wrong thing.

It can strain relationships if your family or friends don't want to talk. But talking can help increase trust and support between you and them.

Help your family and friends by letting them know if you would like to talk about what’s happening and how you feel.

You might find it easier to talk to someone other than your own friends and family. We have cancer information nurses you can call on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.

Or you may prefer to see a counsellor.

Who can help?

Your hospital nurse or doctor can help you if you’re finding it difficult to cope. Do let them know how you are feeling. They can refer to other specialists and give you information about support groups.

The NHS website also has a service that tells you about local cancer information and support services.

Support organisations such as The Mouth Cancer Foundation support people affected by head and neck cancer. Its website has information about mouth, throat, and other head and neck cancers.

Physical changes

Mouth and oropharyngeal cancer and the treatment can cause physical changes in your body. These changes can be difficult to cope with and may affect the way you feel about yourself. It might affect your self esteem, and the way you relate to other people. 

Surgery for mouth and oropharyngeal cancer may change the way you look. These changes can affect you in different ways. 

If you are having a sexual relationship, the changes might affect your sex life. 

You might feel very tired and lethargic a lot of the time, especially during and for a while after treatment or if the cancer is advanced.

Depending on the type of cancer and the treatment, you might have changes to the way that you breathe, eat or drink, or speak.

Coping practically

You and your family might need to cope with practical things including:

• money matters
• financial support, such as benefits, sick pay and grants
• work issues
• childcare
• Blue Badge applications
• help with travel costs
• changes to your house

Talk to your doctor or specialist nurse to find out who can help.  You might be able to get some benefits for yourself and the person caring for you. You might also be able to get grants for heating costs, holidays and other household expenses related to your illness.

Getting help early with these things can mean that they don’t become a big issue later. It may be helpful to see a social worker. Many hospital cancer departments have a social worker available for patients.

Stopping smoking

Stopping smoking after mouth and oropharyngeal cancer can reduce your risk of your cancer coming back. This can be extremely difficult especially if you have smoked for many years.

Free services and treatments are available to help.