Carcinoid syndrome is the name given to a group of symptoms that people experience if they have carcinoid tumours. These are rare and often slow-growing tumours that occur in the small intestine, colon, appendix and lungs. Most people have never heard of carcinoid tumours, so there is little awareness of the symptoms of carcinoid syndrome, or how it is treated. Fortunately, for most people affected by this rare form of cancer, treating the carcinoid tumour itself can reduce or control many of the symptoms of carcinoid syndrome.
This article on the treatment of carcinoid syndrome is by Kathryn Senior, a freelance journalist who writes health, medical, biological, and pharmaceutical articles for national and international journals, newsletters and web sites.
The symptoms of carcinoid syndrome are caused by carcinoid tumours releasing hormones into the bloodstream. These tumours tend to be small and yellow and have well defined edges. They crop up along the digestive tract, being most common in the appendix, rectum and small intestine, although they can occur in the lungs in some people.
The tumours form from cells that were originally part of the neuroendocrine system – this system is responsible for producing the hormone serotonin. When they grow out of control, the tumours over produce serotonin, which is released into the body where it creates havoc with body systems. Fortunately, carcinoid syndrome occurs in only 10% of people with carcinoid tumours, usually after the tumour has spread to the liver or lung.
The most common symptoms of carcinoid syndrome are due to the effects of excess serotonin and include:
Some people with carcinoid syndrome find that their symptoms are brought on by physical exertion, stress, or eating or drinking certain things such as blue cheeses, chocolate, or red wine. A diet high in fibre or fatty/greasy foods can make the diarrhoea associated with carcinoid syndrome worse.
The mainstay of treatment for carcinoid syndrome is to treat the underlying carcinoid tumour. The preferred treatment for carcinoid tumours in most cases is surgical removal or reduction (‘debulking’) of the tumour. Depending on the location of the tumour, however, surgery may not always be possible. If you aren’t able to have surgery, you will be offered several other options for treating your carcinoid tumours and the resulting carcinoid syndrome:
You may be offered a combination of treatments for the most effective control of carcinoid syndrome. For example, chemotherapy may be used in combination with somatostatin analogues, or before or after surgery.
In rare cases, carcinoid syndrome can lead to other complications such as heart disease and carcinoid crisis.
In addition to medical treatment, there are things you can do yourself to help manage the symptoms of carcinoid syndrome. Keeping records of when your symptoms occur can help you to work out if certain triggers, such as stress or particular foods or drinks, cause your condition to worsen. It is also important to replace the fluid and electrolytes that you lose through diarrhoea. Drinking little and often and drinking electrolyte replacement drinks can help.
You may also be able to join a support group. Your nurse or doctor will be able to tell you about support groups in your area, or you can contact a carcinoid syndrome organisation directly.
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