Changes in your appearance due to mouth and oropharyngeal cancer

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

It can be upsetting at first. Some people find that they have intense feelings, including grief, fear and anger.

Changes to how you look might also affect your self confidence and body image. But there are lots of things you can do to help you cope with them. Your team may be able to refer you to a psychologist or trained counsellor.

Possible changes in how you look

Surgery involving your jaw, tongue, mouth, lips, and throat might change the way you look. The changes in your appearance depend on the type of surgery you have. Your surgeon and specialist nurse will explain what will happen before you have your surgery and how you will look afterwards.

You usually have scarring after surgery but even with big operations, you might not have a great deal of scarring. Many scars fade over time and are not so easy to see.

Your surgeon aims to make scars in the creases already on your face or neck. If you need to have bone removed from your face, your surgeon will rebuild them and it may not look visible from the outside. They will use bone grafts from other parts of your body for this. 

Scaring from lip surgery might be more difficult to hide. So if you have cancer in this area, it is likely you will have to cope with changes in the way you look. There might be quite a big change, but even a small change can have a big effect on how you see yourself.

A team of skilled specialists will look after you. This may include a plastic surgeon as well as your cancer surgeon. They will try to keep the shape of the face and reduce scarring as much as possible.

If you had radiotherapy, the skin in that area might be darker than before.

Having a breathing stoma 

You might have an opening in your neck to breathe through. This is called a breathing stoma. Getting used to the stoma will take some time. It is common to feel self conscious at first, but you will adjust. You’ll have a specialist nurse to help you get used to your stoma and show you how to look after it.

Self esteem

How you look is an important part of how you feel about and value yourself. This is called your self esteem. It can be very hard to accept sudden changes to the way you look. You might feel very angry, confused and upset. It might be useful to talk to someone close to you.

Going back to work, meeting new people or going to job interviews can all be difficult if you are trying to cope with changes to your appearance.

If you have children, you might worry that their friends will see you and whether that will affect your children. It is natural to worry about this but remember, people close to you will not think of you differently as a person. They will want to support you as much as they can, so let them know how you are feeling. Talking to them might make you feel more supported and less isolated. 

What you can do

There are lots of things you can try to help you cope with changes in your looks. These might not take away all the difficult emotions but can make things easier. 

Talk to your surgeon before surgery 

This is probably one of the most important things you can do, even if you feel at the time that you don't want to know. It can help you cope with changes to your appearance later on if you know exactly what they will do, and how you will look. You will be very sore and swollen straight after surgery but this is temporary and is not how you will look forever. 

Ask as many questions as you need to. Your surgeon and nurse specialist will be aware of how worried you are about possible changes in your appearance.

Talk to someone who has had a similar experience 

Your surgeon or specialist nurse might be able to put you in touch with someone who has had a similar operation or direct you to support groups. Some people find this reassuring and informative. This is not the case for everyone. So don't feel like you have to do this.

Look at yourself in the mirror

Your first reaction after surgery might be to avoid looking at yourself in the mirror. This is normal and it's completely up to you when you look at yourself. It might be worth waiting a little while after the operation until you feel awake and alert and you have recovered a bit.

Having a nurse with you the first time you look can be helpful. Even if you have thought about how you might look, it can still be a shock. Your face might be swollen and numb. You may also have to deal with seeing stitches and changes to the structure of your face. Having someone to answer your questions can be supportive. 

Your feelings

Many people feel angry at first. You might feel that your doctor and specialist nurse have not prepared you for how you will look. It can feel hard to imagine that you will feel a little better as time goes on and the bruising and swelling improve.

Your family and friends may not know what to say to you. They won't want to make you anxious or upset. You may prefer to bring up the subject and let them know how you are feeling. It is a good idea to keep regularly looking at your face in the mirror.

Doing things in your own time

It is important to give yourself time to adjust to changes in your appearance. There will come a time when you will need to go out again. Going out may feel scary at first, and it might be tempting to keep putting it off. Telling your family and friends how you feel can help them to support you.

It might be helpful to go out for the first time with someone you are very comfortable with. Try to be prepared for mixed reactions. People can react unexpectedly, especially if you don't know them well. Some people might be shocked and might not hide their shock. Others will be very at ease and make you feel comfortable very quickly. 

You may feel that you can't do anything about other people's reactions. But if you feel at ease, they will be more likely to feel they can talk to you or look you in the eye. Children can be very honest and might ask direct questions. It can help to be prepared for this. 

Don't feel that you have to explain to people if you do not want to. After all, it is your body and you don't have to tell people what has happened if you don't want to. 

Talking to people close to you

You might get the best support from your close family and friends. But don't be surprised if they are not sure what to say to you at first. They won't want to make you feel anxious or to say anything that might upset you. It may be easier if you bring the subject up and let them know how you feel.

It can help just to share your feelings. Those close to you may feel privileged that you have chosen to confide in them. If you don’t talk to them, they may worry that you are bottling it all up.

If you're having problems with your intimate and sexual relationships because you feel unattractive, let your partner know.

Using camouflage make up

Camouflage make up can be very useful to cover scars or skin grafts that are different colours. There are lots of colours for all skin tones. There are some specially trained skin camouflage experts who work in the NHS. Ask your doctor or nurse if you have this in your hospital.

An organisation called Changing Faces can give you information about using camouflage make up. They can teach you how to apply it and tell you about the best products to buy.

Getting the make up

You can buy some camouflage make up over the pharmacy counter or direct from the supplier. Others you might be able to get on prescription from your GP. This isn’t guaranteed though. Your GP can tell you what might be available on prescription.   

Getting help and support

Not everyone feels comfortable asking for outside help and support, but many people find it very useful.

There are a number of organisations and support groups that help people cope with changes in physical appearance.

These include:

• Changing Faces - this organisation helps people cope with disfigurements affecting the face

• Let’s Face It - this organisation links people to resources that can help them cope better with facial disfigurement

• The Swallows - a nationwide head and neck cancer charity for people who have difficulty with swallowing. They provide support to patients and carers

• Head and Neck Cancer UK - a charity that advocates for patients and their carers, raise awareness and provide information to patients and survivors

• The Throat Foundation - a charity that raise awareness of cancers that affect the head, mouth and neck, support research into prevention and cure and campaign for universal HPV vaccination

• Young Tongues - a support group for young people with tongue cancer

• Saliva Gland Cancer UK - a charity for those with rare salivary gland cancers such as adenoid cystic carcinoma