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Coping with carcinoid syndrome

Find out what you can do, who can help and about how to cope with the symptoms and complications of carcinoid syndrome. 

What carcinoid syndrome is

Some carcinoid tumours release hormones that cause symptoms. Doctors call this collection of symptoms carcinoid syndrome. It is more likely to happen if the carcinoid tumour has spread to other parts of the body, especially the liver.

The symptoms of carcinoid syndrome include:

  • flushing of the skin
  • diarrhoea
  • wheezing
  • a fast heart beat
  • dizziness due to sudden low blood pressure

Drinking alcohol can bring on the symptoms in some people with carcinoid.

Helping yourself

As well as the treatments your doctor recommends, you can do other things to help with symptoms of carcinoid syndrome.

Skin flushing

You might find it helps to keep a record of your flushes to see if anything in particular makes them worse. For example, some people find that stress can trigger them. Other common triggers for flushing include eating large meals or drinking alcohol.

Diarrhoea

You lose a lot of fluid when you have diarrhoea. It's 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, so it might help to avoid these.

If the diarrhoea goes on for a long time, it could lower the levels of vitamins in your body. In particular, the level of vitamin B3 (niacin) may drop. This can cause a condition called pellagra. Your doctor may advise you to take a vitamin supplement. You can speak to a dietitian about your diet.

Complications

Rarely, people with carcinoid syndrome may develop other complications such as heart disease or carcinoid crisis. Your doctor regularly checks for these.

Heart disease

Carcinoid syndrome can make the valves around your heart get thicker. This means they can't work as they should. You might feel breathless and more tired than usual.​

Doctors recommend that you have a heart test called an echocardiogram if you have either: 

  • a carcinoid tumour in the small bowel, appendix or first part of the large bowel
  • carcinoid syndrome when your tumour is first diagnosed

Your doctor might check your heart valves every few years. If you have any changes in your heart, you see a doctor who specialises in heart problems. You might need to take tablets to help. Some people might need to have surgery to the heart valves

Carcinoid crisis

Carcinoid crisis is very rare. You have severe skin flushing, get breathless, your blood pressure drops and you may get confused.

A carcinoid crisis can happen for no obvious reason. In some people, an anaesthetic or treatment such as surgery or chemotherapy can set it off. Before you have any treatment you might need to have a drug called octreotide through a drip to prevent carcinoid crisis. Octreotide is a type of somatostatin analogue.

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 carcinoid tumours 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.

You can also talk things through with Cancer Research UK's information nurses. You can call them on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday.
Last reviewed: 
30 Jun 2016
  • Cancer: Principles and Practice of Oncology (10th edition)
    VT DeVita , TS Lawrence, SA Rosenberg
    Lippincott, Williams and Wilkins, 2015

  • Cancer and its Management (7th edition)
    J Tobias and D Hochhauser
    Wiley-Blackwell, 2015

  • Guidelines for the management of gastroenteropancreatic neuroendocrine (including carcinoid) tumours (NETs)
    JK Ramage and others
    Gut,  2012. Volume 61, Issue 1

  • Up to date Website
    http://www.uptodate.com/contents/carcinoid 
    Accessed June 2016 

     

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