What is carcinoid syndrome?

Carcinoid syndrome is a collection of symptoms that can occur with a type of cancer called 'carcinoid'. There is information on this page about

 
 

Carcinoid

Carcinoid is a cancer of the neuroendocrine system (the body system that produces hormones). Carcinoid tumours are usually slow growing. They are most common in the gut, usually the appendix or small bowel. But they can also grow in the lung, pancreas, kidney, ovaries or testicles. The prognosis for carcinoid is generally very good. But like most cancers, this depends on

  • The size of the tumour
  • Where the tumour is in the body
  • Whether it has spread
  • Your age and general health

Carcinoid can sometimes be cured with surgery. Even if the tumour cannot be completely removed, it may not cause too many problems as carcinoid usually grows very slowly.

But carcinoid can spread to the

  • Liver
  • Lung
  • Lymph nodes
  • Lining of the abdomen

Like many cancers, once carcinoid has spread, it is unlikely to be cured. But because this is such a slow growing tumour, even people with secondary carcinoid can live normally for many years. The five year survival rate for carcinoid that has spread is around 80%.

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What carcinoid syndrome is

Carcinoid syndrome is caused by the carcinoid tumours releasing hormones into the bloodstream. The syndrome most often occurs in people who have carcinoid that has spread to the liver. It is not common in lung carcinoids. The hormones cause symptoms including

  • Diarrhoea
  • Flushing of the skin
  • Wheezing
  • Abdominal pain
  • Palpitations

Only one in ten people with carcinoid has this syndrome. Your doctor will treat the symptoms. For example, they may give drugs to widen the breathing tubes for wheezing or anti diarrhoea medicines for diarrhoea. They may give drugs called octreotide or lanreotide. These reduce the levels of serotonin, the main hormone released by carcinoid tumours. They are given as a small injection under the skin. You may be taught to give this injection yourself. You usually have it 3 times a day at first and then may have it weekly or monthly.

There is no cure for carcinoid syndrome. But the octreotide or lanreotide may be able to delay the growth of tumours in some people and control the symptoms for some time. Many people with this condition are well and lead active lives with only occasional symptoms. As the tumours gradually grow, they produce more and more of the hormones. Eventually, it may be difficult for the drugs to control the symptoms completely.

People do die of carcinoid disease, but it tends to develop more slowly than other cancer types and is usually a long term condition.

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More information

On CancerHelp UK we have a section with detailed information about carcinoid tumours and coping with carcinoid syndrome.

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