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Coping with carcinoid tumour

Men and women discussing carcinoid cancer

This page has information about coping physically, emotionally and practically when you have carcinoid (neuroendocrine tumour).

 

A quick guide to what's on this page

Your feelings

Coping with a diagnosis of carcinoid can be very difficult. At first, you are likely to feel very upset, frightened and confused even if you are told that your carcinoid may be cured or is likely to grow very slowly. It is very important to get the right information about your tumour and how it is best treated. People who know about their illness and treatment are more able to make decisions and cope with what happens.

As well as coping with the fear and anxiety that a diagnosis of carcinoid brings, you may also have to work out how to manage practically. You may need information about financial support, such as benefits, sick pay and grants. Who do you tell that you have carcinoid? And how do you find the words? You may also have children to think about.

Our coping with cancer section contains lots of information you may find helpful. There are sections about feelings and emotions, talking about cancer, financial help, and sex and relationships. 

 

CR PDF Icon You can view and print the quick guides for all the pages in the Living with carcinoid section.

 

 

Coping with your diagnosis

At first, you are likely to feel very upset, frightened and confused even if you are told that your carcinoid is very likely to be cured or to grow very slowly. You may feel that things are out of your control. It is very important to get the right information about your tumour and how it is best treated. People who know about their illness and treatment are more able to make decisions and cope with what happens.

You may feel strongly that you need to know why this has happened to you. Unfortunately, doctors can’t tell why one person gets carcinoid and others don’t. The coping with cancer section has lots of information about your emotions that you may find helpful.

 

How carcinoid can affect you physically

A carcinoid tumour and its treatment may cause physical changes in your body. These changes can be very difficult to cope with and may affect the way you feel about yourself. Surgery for carcinoid may cause scarring. Such body changes can affect your self esteem and the way you relate to other people, especially close family and friends.

After bowel surgery, or if you have carcinoid syndrome, you may have loose stools or diarrhoea for some time. Your doctor or nurse can advise you on ways of managing any changes in your bowel habits. 

Read more about coping with diarrhoea.

Another problem you may have to cope with is feeling very tired and lethargic a lot of the time, especially for a while after treatment or if the carcinoid is advanced. 

Find out about fatigue and ways of managing it.

If you are having a sexual relationship, one or all of these changes may affect your sex life. 

Read more about sex and cancer.

 

Coping practically with carcinoid

As well as coping with the fear and anxiety that a diagnosis of carcinoid brings, you may also have to work out how to manage practically. There may be money matters to sort out. You may need information about financial support, such as benefits, sick pay and grants. Who do you tell that you have carcinoid? And how do you find the words? A rare condition like this isn’t easy to explain. Finding out about it can help you to explain it to other people. You may also have children to think about. We have information about talking to people about your cancer and how and what to tell children.

Just try to remember that you don’t have to sort everything out at once. It may take some time to deal with each issue. Do ask for help if you need it though. It is likely that your doctor or specialist nurse will know who you can contact to get some help – they can put you in touch with people specially trained in supporting people with cancer. These people are there to help and want you to feel supported. So use them if you feel you need to. You may need to have access to support staff, such as a stoma nurse or dietician. Social workers can help you with information about your entitlement to sick pay and benefits. If you live alone, a social worker may be able to help by organising care when you first come out of hospital.

The coping with cancer section has lots of helpful information. There are sections about

 

Where to get more information

If you would like more detailed information about coping with carcinoid, contact one of the organisations on our carcinoid organisations page.  They will be happy to help. They can put you in touch with a support group. Or they may have free factsheets and booklets they can send to you. 

You can also contact our cancer information nurses. They would be happy to help.

You can find details of counselling organisations, that can tell you more about counselling and help you find sources of emotional support in your area.

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Updated: 29 June 2016