Coping with carcinoid syndrome

It can be difficult to cope with carcinoid syndrome and its complications. You might have ongoing symptoms such as diarrhoea and flushing of the skin that are difficult to control.

As well as the treatments your doctor recommends, you can do other things to help with the symptoms. There is also practical help and support for you and your family.

Coping with flushing of the skin

You might find it helps to keep a record of your skin flushes to see if anything in particular makes them worse. For example, some people find that stress can trigger them.

Other common triggers include:

• exercise
• drinking alcohol or caffeine
• eating foods that contain a substance called tyramine such as chocolate, bananas and walnuts
• eating large meals or spicy foods

Avoiding the triggers that cause skin flushing can help to control it.

Coping with diarrhoea

You lose a lot of fluid when you have diarrhoea. It is important to replace the fluid to prevent dehydration. Drink little and often and try to drink at least 2 to 3 litres a day.

Although it is usually healthier to eat a diet high in fibre, this can make diarrhoea worse. Fatty, greasy foods can also make it worse. Some foods such as rice, pasta and dry biscuits tend to make your poo (stool) firmer so try these instead.

When you have diarrhoea for a long time, the levels of vitamins in your body can drop. Your doctor might advise you to take a vitamin supplement to prevent this from happening.

Ways to cope

It isn’t easy to cope with carcinoid syndrome. People often think they have an idea of what having cancer is like, but NETs are different from other tumours. You might have ongoing symptoms and treatment that other people don’t understand. You may find that you have to explain to people what it all means.

It's important to give yourself time. Adjusting to major changes in your life is never easy, and can take a while. There isn’t a right or wrong way to cope with carcinoid syndrome. You need to find the best way for you. 

Your hospital can support you too. Ask your nurse or doctor about the help that is available. They can tell you about support groups in your area where you can discuss your feelings and fears with other people who have some idea of what you are going through.

Talking to people with the same condition can help. But it can be hard to find someone else with a rare tumour. Our discussion forum Cancer Chat is a good place to share experiences, stories and information with other people who know what you are going through.

Neuroendocrine Cancer UK

Neuroendocrine Cancer UK is a UK wide charity providing support and information to those affected by neuroendocrine cancer. They also have a helpline.

Cancer Research UK nurses