What is Carcinoid syndrome and carcinoid tumours?

Carcinoid syndrome is a condition that can occur in both children and adults. Carcinoid syndrome is actually a group of symptoms that can occur together. These symptoms are caused by a large tumour in the pancreas, called a carcinoid tumour. This tumour is made up of cells called carcinoid cells.

Carcinoid tumours are the most common type of endocrine tumour in the pancreas. They are usually made up of two types of cells. These are tumour cells called carcinoid cells and neuroendocrine cells.

Neuroendocrine cells are related to the nervous system. They make up the rest of the body’s endocrine system. The main role of these cells is to secrete hormones into the blood. These hormones then travel through the bloodstream and into the body’s tissues.

Symptoms of carcinoid syndrome

If a carcinoid tumour is large enough to affect the blood vessels that supply the pancreas, the symptoms of carcinoid syndrome will also be affected.

The symptoms can vary in severity and can include:

  • A raised blood pressure
  • Flushing
  • Diarrhoea
  • Abdominal pain
  • A feeling of fullness in the stomach, or even nausea and vomiting
  • Difficulty controlling the bowels, or even diarrhoea
  • Difficulty breathing
  • Palpitations
  • Feeling faint or dizzy
  • Heart palpitations
  • Heart failure

How is carcinoid syndrome treated?

The symptoms of carcinoid syndrome can usually be controlled if the carcinoid tumour is small enough to be treated. If the symptoms are severe, though, the symptoms may need to be treated with medication, to reduce the blood pressure and reduce the symptoms.

The symptoms may also be controlled by surgery to remove the tumour. Many people who have a carcinoid tumour that is small enough to be treated with surgery will also need to have a few of their own tumours removed as well.

If the symptoms are severe, or if the tumour has grown into the surrounding tissues, surgery to remove this tissue may also be necessary.

Diagnosing carcinoid syndrome

If you have symptoms of carcinoid syndrome, you should see your GP. Your GP will start by carrying out a physical examination and will ask you about your symptoms and how often they occur.

Your GP will then carry out a number of tests to check for the tumour. The tests may include:

  • Blood tests
  • X-rays
  • Ultrasound scan
  • CT scan
  • MRI scan

These tests will all be carried out to see if there is a tumour in the pancreas.

If your symptoms are severe, you may also need a gastroscopy. This is where a small tube is inserted into the stomach and the tumour is then seen on a video monitor. This is called a ‘gastroscopy’.

Treating carcinoid syndrome

Treating the symptoms of carcinoid syndrome will depend on how severe the symptoms are.

If the tumour is large enough to affect the blood vessels that supply the pancreas, the symptoms of carcinoid syndrome may also be affected. Smaller tumours, though, are usually treated with surgery to remove the tumour.

If you have a carcinoid tumour that has grown into the surrounding tissues, you may also need to have these tissues removed.

Medication

There are two main drugs used to treat carcinoid syndrome. These are:

  • Somatostatin analogues, which are given by injection
  • Chemotherapy drugs, which are given by mouth

Somatostatin analogues

Somatostatin analogues are a type of drug that can be given by injection. They are given to reduce the blood pressure and reduce the symptoms of carcinoids.

There are two types of somatostatin analogues:

  • Lomustine (CCNU)
  • Pomalidomide (Pomalyst)

Lomustine

Lomustine is a type of drug called a chemotherapeutic drug. It can be given by mouth.

Lomustine is very effective in treating carcinoid syndrome. It works by stopping the tumour from growing, helping to control the symptoms, and reducing the size of the tumour.

Pomalidomide

Pomalidomide is a type of chemotherapy drug. It can be given by mouth.

Pomalidomide is very effective at treating carcinoid syndrome. It works by stopping the tumour from growing, and controlling the symptoms, and reducing the size of the tumour.

Losing weight

You may need to lose weight if you have a carcinoid tumour. This is because a large tumour can make you feel very tired and weak.

Your GP may refer you to a dietitian for advice on how to do this. You may also be referred to a weight loss clinic if you need help with this.

Surgery

If the symptoms of carcinoids are severe or if the tumour is growing into the surrounding tissues, you may need to have surgery to remove the tumour. This is called a Whipple procedure.

This is a procedure where the tumour is removed. The operation is carried out under anaesthetic, so you will be asleep during the operation. The tumour will be removed in sections.

If you have a small carcinoid tumour, you may be able to have the tumour removed using a minimally invasive procedure. This is where a small section of the tumour is removed using a small cut.

You may need to have a repeat operation if you have a large tumour or if the carcinoid tumour has grown into the surrounding tissues.

Your surgeon will discuss the best option for you with you.

Supporting people

You may find it helpful to talk to other people who have a carcinoid tumour. You can find a support group through the Pancreatic Cancer UK website.

Living with carcinoid syndrome

The symptoms of carcinoids can be controlled by treating the symptoms with medication. You may also be able to have surgery to remove the tumour if you have a large enough tumour to cause the symptoms.

However, if you have a small enough tumour that hasn’t grown into the surrounding tissues, you may not need a large operation.

You can also talk to your doctor or specialist nurse about how to help you manage the symptoms of carcinoids.

Living with carcinoid syndrome after treatment

After treatment, you may be able to treat the symptoms of carcinoids with medication. This may also help to reduce the risk of them returning.

If your carcinoid tumour is large, you will probably need to have surgery to remove the tumour. This is called a Whipple procedure. It is usually carried out under general anaesthetic.

You may also be referred to a specialist, who can talk to you about how to help you manage the symptoms of carcinoids after treatment.

Can I prevent carcinoid syndrome?

You cannot prevent carcinoid syndrome. However, you can reduce the risk of the symptoms developing.

You can take steps such as:

  • Eating a healthy, balanced diet
  • If you smoke, quitting smoking
  • Reducing your alcohol consumption
  • Maintaining a healthy weight
  • Staying active

Final thoughts

Treatment for carcinoid syndrome is normally done with surgery to treat the tumour. If this doesn’t work, the treatment options include chemotherapy and somatostatin analogues.

Carcinoid syndrome can also develop after treatment for a tumour. This is called’recurrence’.

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