Gastrointestinal Carcinoid Tumours

What is carcinoid?

Carcinoids are rare types of tumours which usually grow very slowly, meaning it can take several years for somebody to develop symptoms. Most people who are affected by carcinoids are aged 60 or over, but they can affect people of all ages and are slightly more common among men than women. Carcinoids affect the neuroendocrine system, which is responsible for making hormones and is made up of the glands and nerve cells.

There are different types of carcinoid tumour, with most originating in the digestive system, but they can also develop in the lungs, ovaries, pancreas, testicles and kidneys. Carcinoid tumours can also spread to the liver.

What causes carcinoid?

The cause of carcinoid is largely unknown, although some risk factors have been identified. These include:

  • Heritage: carcinoid is slightly more common among black African men than other races
  • Smoking: smoking increases your risk of developing many forms of cancer, including carcinoid
  • Family history
  • Medical conditions: people with stomach conditions involving the production of excessive acid are more likely to develop carcinoid

Symptoms of carcinoid

In many cases, it takes several years for symptoms of carcinoid to appear and many cases are diagnosed during testing for other conditions. Symptoms of carcinoid vary according to the location of the tumour and may include:

  • In the lungs: chest pain, wheezing, coughing up blood, tiredness, weight gain, nausea
  • In the stomach: weight loss, fatigue, pain and generally feeling weak
  • In the bowel: in most cases, there are no symptoms, though, if there are, they may include pain and a blockage in the bowels that can cause constipation, diarrhoea and nausea.

How is carcinoid diagnosed?

Your GP will refer you to a specialist if they feel that you may have carcinoid, and they will carry out further tests. Tests carried out at the hospital may include physical examinations and X-rays, with further tests depending on the form of carcinoid you have. If you are diagnosed with carcinoid a multi-disciplinary team will take care of you.

How is carcinoid treated?

Carcinoid tumours grow at different rates and the treatment plan will usually be based on the size, location and stage of cancer. The most common treatments for carcinoid include surgery, radiotherapy, chemotherapy and somatostatin analogues. Your care team will explain treatment options to you and talk you through the treatment process.

What is the outlook for carcinoid?

The outlook for carcinoid depends on the stage and location of the tumour and will often depend on where the tumour originated and how much it has grown. Your doctor will explain the prognosis and discuss options with you. 67 percent of people diagnosed with carcinoid (of all types) survive for at least 5 years after diagnosis.

Living with carcinoid

Accepting that you have carcinoid cancer can be very difficult, but if you need support, help or advice, you can contact helpful cancer charities in the UK. You will also have a healthcare team that supports you throughout treatment and recovery.

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