Changes in your appearance due to mouth cancer
This page has information about coping with changes to your appearance after surgery for mouth and oropharyngeal cancer. You can find information about
Changes in your appearance due to mouth or oropharyngeal cancer
Surgery involving the jaw, tongue, mouth, oropharynx, lips and throat may change the way you look. But modern surgical techniques and reconstructive surgery are very good these days. They tend not to cause much scarring, even with very big operations.
Your surgeons will try to position scars inside the creases already on your face. And with time, many scars will fade and be far less visible. If you need to have bones removed from your face, your surgeon can often rebuild them so that they look normal from the outside.
Surgery to the lips is harder to hide. So if you have cancer in this area, it is likely that you will have to cope with changes in the way you look. If you have a hole in your neck to breathe through (a stoma) you may also feel very self conscious and find it hard to cope.
How surgery may affect your self esteem
How you look is an important part of your self esteem. It can be very hard to accept sudden changes in your looks that you are not happy with. It is usual for people who have had surgery to their face to feel very angry, confused and upset for some time afterwards. The thing to remember is that the people most important to you will not think of you any differently as a person.
Things that may help you cope
There are several things that may help you to cope with changes in your looks. These include doing things at your own pace and getting any help and support you need.
You can view and print the quick guides for all the pages in the Living with mouth cancer section.
Surgery that involves the jaw, tongue, mouth, lips and throat may change the way you look. But modern surgical techniques and reconstructive surgery are very good these days. They tend not to cause much scarring, even with very big operations.
Your surgeons will do all they can to position scars inside the creases already on your face. And with time, many scars fade and are far less visible. You may still be very aware of them but other people may not even notice. If you need to have bones removed from your face, your surgeon can often rebuild them so that they look normal from the outside. The surgeon will use bone grafts from other parts of your body to do this.
Surgery to the lips is much harder to hide. So if you have cancer in this area, it is likely that 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. If you have a hole made in your neck to breathe through (a breathing stoma) you may also feel very self conscious and find it hard to cope.
How you look is an important part of how you feel about yourself (your self esteem). It can be very hard to accept sudden changes in your looks that you are not happy with. It is usual for people who have had surgery to their face to feel very angry, confused and upset for some time afterwards. You may feel worried about how your friends and family see you. You may worry about being physically attractive to your partner.
Going back to work, meeting new people and going for job interviews can all be difficult if you are trying to cope with changes in your appearance. If you have children you may worry how their friends will see you and whether that will affect your children. It is natural to worry about these things. But it is important to remember that the people close to you will not think of you any 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 can help you to feel more supported and less isolated.
There are several things that may help you to cope with changes in your looks. These may not take away all the difficult emotions but can make things easier. They include
- Talking to your surgeon and nurse specialist before your surgery
- Talking to someone who has had a similar experience
- Looking at yourself in the mirror
- Doing things in your own time
- Talking to the people close to you
- Tips to help hide skin changes
- Getting help and support
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 exactly what the surgeon will do, it will help you deal with things later on. Ask your surgeon to be very honest with you and find out exactly what they are going to do and how you will look. You are likely to be very swollen and sore immediately after your 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. They will want to reassure you where possible.
This may not help everyone so don't feel you have to do this. But some people find it very helpful and reassuring to speak to someone else who has had to cope with surgery that changes the way they look. Your surgeon or specialist nurse may be able to put you in touch with someone who has had a similar operation to yours. Or one of the mouth cancer organisations may be able to help.
Your first reaction after your surgery may be to avoid seeing yourself. This is usual, and when you do look is really up to you. It is usually better to wait until a few days after your operation when you have recovered a bit and feel more awake and alert. When you do feel ready to look, it is helpful to have someone with you such as your doctor or nurse. Even if you thought you had an idea about how you were going to look, it can still come as a shock. Your face is likely to be swollen and a bit numb. You may also have to deal with seeing stitches and changes to the structure of your face. So it is helpful if someone is there to support you through this and answer any questions that you have.
Many people feel very angry at first and wish that they had never had the operation. You may feel that the surgeon or specialist nurse had not prepared you enough for what you have seen. Just give yourself a bit of time to let it all sink in. It might be hard to imagine but you will feel a bit better about things as time goes on and the swelling and bruising settles. The hospital staff will be very aware of how you feel and will do all they can to reassure you about healing. They can also tell you where you can get help and support if you feel you need it.
Don't be surprised if your family and friends don’t know what to say to you. They won’t want to make you anxious or say anything that might upset you. It is often easier if you bring up the subject and let them know how you feel. It is also a good idea to keep looking at your face every so often.
It is important to give yourself time to adjust if you have any major changes in your appearance. But there will come a time when you will need to go out again. You will need to meet people and perhaps go back to work and do everyday things like shopping. Going out may feel very scary at first and you may be tempted to keep putting it off. But telling your friends and family how you feel can help them to support you.
When you first go outside, go with someone you trust and feel very comfortable with. Be prepared for mixed reactions. People’s reactions can vary depending on how well you know them. Even good friends can react in a way you were not expecting. Some people may be quite shocked and this will show on their face no matter how hard they try to hide it. Others will be very at ease and make you feel comfortable very quickly.
There is not much you can do to change 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 often be very honest and ask quite direct questions like “what happened to your face”, or “why does that man look funny?” It can help to be prepared for this too.
Don't feel that you have to explain too much to people if you don't want to. After all, it is your body and if you don't want to tell people what has happened, you don’t have to.
The best support you are likely to get is from your close family and friends. You may feel at first that you don't want to share too much in case you upset other people. But if you do share your feelings, you may be surprised at how much it can help.
If you are having problems with your intimate and sexual relationships because you feel that you are no longer attractive, try letting your partner know how you are feeling. There is detailed information about this on the page about changes in your sex life in this section.
If you have scars, or have had skin grafts to your face and neck that are a different colour, you can get make up to cover up the problem areas. It is called camouflage make up and you can get it on prescription from your GP. There are different colours for all skin tones. Some organisations can teach you how to apply it, and can advise you about the best products to buy. These include
Some head and neck clinical nurse specialists are also trained to apply this make up and will be able to give you a lesson or two.
Other ways that you can hide changes include wearing
- Scarves to hide any scars on your neck
- Hats to take the attention away from your face
Sometimes it is best not to draw attention to the affected area. Trying to do too much to hide scars or changes does not always help. It is best to experiment and do what makes you feel the most comfortable.
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 their physical appearance. These include
- Changing Faces – an organisation that helps people cope with facial changes
- Let’s Face It – a non profit organisation that links people to resources that can help them cope better with face changes
- Mouth Cancer Foundation online support group – a forum for patients to help each other
Our mouth cancer reading list has details of books and booklets on talking about cancer, some of which are free. If you want to find people to share experiences with online, you could use CancerChat, our online forum. Or you can go through My Wavelength. This is a free service that aims to put people with similar medical conditions in touch with each other.
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