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This information is about a rare type of cancer called a carcinoid tumour.
A carcinoid tumour, sometimes called 'carcinoid', is a tumour of the neuroendocrine system.
The neuroendocrine system makes chemical messengers called hormones, which regulate the working of different organs in the body. Neuroendocrine cells are spread throughout the body in organs such as the stomach, bowels and lungs.
Most carcinoid tumours start in the appendix or the small bowel. They may also start in other parts of the digestive system such as the large bowel, or less often, in the stomach, pancreas, bile ducts or gall bladder. Sometimes they begin in the lungs. Rarely they are found in other areas including the kidneys, ovaries or testicles.
Carcinoid tumours often grow slowly, and it may be several years before symptoms appear and the tumour is diagnosed.
Sometimes a carcinoid tumour may be fast-growing and more likely to spread to surrounding tissues, and to other parts of the body.
Carcinoid tumours sometimes make hormone-like substances such as serotonin. If these substances are released into the bloodstream they may cause a group of related symptoms known as carcinoid syndrome.
Carcinoid tumours are rare. As with many other forms of cancer, the exact cause is unknown.
Approximately 1,200 people are diagnosed with carcinoid tumours each year in the UK. These tumours are most likely to affect people over the age of 60. People who have a rare condition called Multiple Endocrine Neoplasia 1 (MEN1)| have a slightly increased risk of developing a carcinoid tumour.
The symptoms of a carcinoid tumour depend on where it is in the body and whether it produces a hormone known as serotonin. Some carcinoid tumours cause very few symptoms and are discovered by chance during an operation or test being carried out for other reasons.
A carcinoid tumour in your digestive system may cause a pain or discomfort in the tummy area (abdomen) that comes and goes. You may feel sick (nausea) or be sick (vomiting), or there may be a change in your bowel habit (how often you pass stools). If you have a carcinoid in the lung, it may cause chest infections and shortness of breath, or you may have a cough or cough up blood.
Carcinoid tumours, particularly those that have spread to the liver, can cause a group of related symptoms known as carcinoid syndrome. The symptoms are caused by too many hormones being made in your body. This upsets the natural hormonal balance of the body.
Symptoms include:
People with carcinoid syndrome may be advised to avoid things that may trigger flushing, such as drinking alcohol or eating spicy food. You may be able to reduce diarrhoea| by making changes to your diet. A specialist dietitian can advise you about this.
You may have some of the following tests:
Some carcinoid tumours cause an increase of a substance called serotonin in the body. Serotonin is broken down by the liver into a chemical called 5HIAA and then passed out of the body in the urine.
This test looks for raised levels of 5HIAA in your urine. You will be asked to save all the urine you pass in a 24-hour period so that it can be tested.
Certain foods, drinks and medicines can raise the levels of 5HIAA. You may be asked to avoid taking these for a few days before and during the urine collection.
The levels of some chemicals in the blood, particularly serotonin and chromograninA (CgA), may be raised if you have a carcinoid tumour. You will have samples of blood taken to check blood levels of these chemicals. You’ll also have a blood test to count the number of healthy blood cells in your blood (called a full blood count or FBC).
This uses sound waves to build up a picture of the inside of your body. You'll usually be asked not to eat or drink anything for at least six hours before the scan. Once you are lying comfortably on your back, a gel is spread onto your abdomen. A small device that produces sound waves is then rubbed over the area. The sound waves produce a picture on a computer. The test is painless and only takes a few minutes. You may also have an ultrasound of your heart called an echocardiogram.
You may be given a drink or injection of a dye that allows particular areas to be seen more clearly. For a few minutes,this may make you feel hot all over. If you are allergic to iodine or have asthma you could have a more serious reaction to the injection, so it's important to let your doctor know beforehand.
This test is similar to a CT scan but uses magnetism instead of x-rays to build up detailed pictures of areas of your body. Before the scan you may be asked to complete and sign a checklist. This is to make sure it’s safe for you to have an MRI scan.
Before having the scan, you’ll be asked to remove any metal belongings, including jewellery. Some people are given an injection of dye into a vein in the arm. This is called a contrast medium and can help the images from the scan show up more clearly. During the test you will be asked to lie very still on a couch inside a long cylinder (tube) for about 30 minutes.
It is painless but can be slightly uncomfortable, and some people feel a bit claustrophobic during the scan. It’s also noisy, but you’ll be given earplugs or headphones. You'll be able to hear, and speak to, the person operating the scanner.
This test may be used to find where the cancer started (the primary tumour) or to check for any spread of the disease (secondaries or metastases).
Carcinoid tumours often absorb a substance called octreotide. A small amount of octreotide is 'labelled' with a mildly radioactive tracer to make it show up on scan pictures. The octreotide is then injected into the bloodstream and taken up by carcinoid tumours wherever they are.
You have three scans: one on the day of the injection and two more over the next two days. You will have to keep still while the scanner takes pictures. Each scan takes up to about an hour and a half. You will be able to go home between scans.
Sometimes a substance called MIBG, which may be absorbed by carcinoids, is used for the scan. It’s also made mildly radioactive and scans are done in a similar way to the scan using octreotide.
The dose of radioactivity from these scans is very low (about the same amount you get from an x-ray), and almost all of it leaves your body within a week. If you are planning to travel abroad within three months of the scan, let the doctor in the scanning department know. They can give you a letter to show to customs officials. This is because ports and airports have very sensitive radiation detectors that may pick up tiny amounts of radioactivity.
A PET scan uses low-dose radioactive sugar to measure the activity of cells in different parts of the body. Areas of cancer are usually more active than normal tissue and show up on the scan. You might have to travel to a specialist centre to have a PET scan. They are not always routinely used as specialists have different opinions about whether they are more helpful than other investigations.
A small sample of cells is taken from the tumour to be examined under a microscope. You will have a local anaesthetic to numb the area before the sample is taken. Sometimes a biopsy is taken under a general anaesthetic, depending on where the carcinoid is in your body.
Grading refers to the appearance of tumour cells under a microscope. The grade gives an idea of how quickly the tumour may develop. Low-grade (grade 1) means that the cells look very much like normal cells. They are usually slow-growing. High-grade tumours (grade 3) have cells that look very abnormal (sometimes called anaplastic or poorly differentiated carcinoid). They are likely to grow more quickly and are more likely to spread. Moderate-grade tumours (grade 2) fall somewhere in between low-grade and high-grade tumours in their appearance and behaviour.
The stage of a cancer is a term used to describe its size and whether it has spread beyond its original site. Knowing the stage of the cancer helps the doctors decide on the most appropriate treatment.
There isn’t a standard staging system for carcinoid tumours but doctors may divide them into three general stages: localised, regional spread, and distant spread (metastatic).
The cancer is contained inside the organ where it started (for example, the appendix, bowel or stomach).
The cancer has grown through the wall of the organ into nearby tissues. It may also have spread to nearby lymph nodes.
The cancer has spread to other parts of the body such as the liver, bones or lungs.
The treatment you have depends on a number of factors including:
The results of your tests will help your doctor discuss the best type of treatment with you.
The main treatment, whenever possible, is surgery to remove the tumour. The aim of this is to cure the cancer. If the carcinoid tumour can’t be completely removed by surgery, treatment is generally aimed at relieving symptoms and improving quality of life.
Some carcinoid tumours are very slow-growing and may not change for months or years. If you have a carcinoid tumour that has spread but isn’t causing any symptoms you may not need treatment straight away. Your doctor will monitor you with regular check-ups and you will be offered treatment if you develop symptoms. This approach is sometimes called ‘watchful waiting'.
Before you have any treatment, your doctor will give you full information about what it involves and explain its aims to you. They will usually ask you to sign a form saying that you give permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent.
If you have a localised carcinoid tumour and are well enough for surgery|, an operation to completely remove the tumour is usually the main treatment. The aim is to cure the cancer. Sometimes this type of operation is also possible if there has been only limited spread (regional spread).
An operation to remove all of the cancer may occasionally be possible for carcinoid tumours that have spread to the liver. This can usually only be done if there are just one or two tumours in the same area (lobe) of the liver.
Surgery can also be helpful in relieving symptoms of a carcinoid that has spread (metastatic). For example, if a tumour in the small bowel is causing a blockage, an operation can be done to remove the tumour or bypass the blockage. Surgery to remove as much of the carcinoid as possible may also be done to relieve symptoms of carcinoid syndrome.
Somatostatin analogues are drugs used to treat the symptoms of carcinoid syndrome and can help to reduce flushing and diarrhoea. They work by stopping the body from making too many hormones.
The most commonly used somatostatin analogues are octreotide (Sandostatin®, Sandostatin Lar®) and lanreotide (Somatuline® LA, Somatuline Autogel®).
To begin with you may be given an injection under the skin up to three times a day. Then, once your symptoms are well controlled, you may be given a longer-acting injection. These are given into the muscle 7–28 days apart, depending on the drug that is used and your response.
This is the use of anti-cancer (cytotoxic) drugs to destroy cancer cells. It may sometimes be used to treat carcinoid tumours that have spread. The aim is to shrink the tumour and reduce symptoms. Research is still looking into using chemotherapy| to treat carcinoid tumours. One study found that carcinoid tumours made up of very abnormal looking cells (poorly differentiated) may respond better to chemotherapy than other carcinoid tumours. These are also often those that are less likely to respond to treatment with somatostatin analogues.
The type of chemotherapy you are given depends on where in the body the carcinoid started.
Another type of treatment for the symptoms of carcinoid tumours uses the drug interferon|, which is a biological therapy. It can be used to treat the symptoms of carcinoid tumours. Interferon is a protein that occurs naturally in the body in small amounts. When given as a drug it can stimulate the body’s immune system to destroy cancer cells. It is given as an injection under the skin. At first it can cause flu-like symptoms such as chills, fever, aching joints and tiredness but these side effects usually lessen after a few weeks.
Sometimes interferon is given in combination with somatostatin analogues.
Radiotherapy| treats cancer by using high-energy x-rays to destroy cancer cells, while doing as little harm as possible to normal cells. It may be given externally from a radiotherapy machine (external beam radiotherapy) or internally by placing radioactive material close to the tumour (brachytherapy).
External beam radiotherapy is most likely to be given to treat symptoms, such as pain, if the tumour has spread to the bones.
There are two types of targeted treatments called MIBG and octreotide. The treatment only works for carcinoid tumours that absorb large amounts of one of these substances. So before it is given you’ll have a scan that measures how much octreotide or MIBG is absorbed by the tumour.
If you have targeted radiotherapy, you may need to be in a room by yourself for a few days, so that other people are not unnecessarily exposed to the radiotherapy. Some people develop tummy aches or feel sick because of the treatment but this can be relieved with medication. You may have a temporary drop in the levels of some of your blood cells. If this happens you may feel tired, be more at risk of infection or bruise or bleed more easily. For most people, the side effects don’t last long and they recover quite quickly.
Sometimes carcinoids in the liver are treated with treatments that directly target the liver. These treatments include hepatic artery embolisation and radiofrequency ablation.
This may be used to shrink carcinoid tumours in the liver and relieve the symptoms of carcinoid syndrome. It works by reducing blood flow to the tumours. Tumours can’t survive without a blood supply.
The doctor gently introduces a thin tube into the main blood vessel in your groin (the femoral artery). Using a scan to guide them, they slowly feed the tube up into the main blood vessel of the liver (the hepatic artery). They then inject a drug that blocks the blood supply (embolises it). Sometimes this is combined with chemotherapy (chemoembolisation).
You will probably stay in hospital overnight. You may feel sick and have tummy (abdominal) pain and a high temperature for a few days afterwards. Your doctor or nurse can give you more information.
Radiofrequency ablation| may be used to treat carcinoid tumours in the liver. It uses laser or radiowaves (microwaves) to destroy the cancer cells by heating them to high temperatures. You are given a sedative to make you feel drowsy and relaxed.
The doctor uses a local anaesthetic to numb the skin of your tummy (abdomen). A fine needle is then inserted through the skin over the liver and into the centre of the tumour. Powerful laser light or radiowaves are passed through the needle and into the tumour, which heats the cancer cells and destroys them.
You will probably stay in hospital overnight. You may feel sick, have tummy (abdominal) pain and a high temperature for a few days afterwards. Your doctor or nurse can give you more information.
Cancer doctors use clinical trials| to assess new treatments. Studies going on at the moment are looking at various new treatments for carcinoid tumours, including:
You may be asked to take part in a clinical trial. Your doctor will discuss the treatment with you, so that you have a full understanding of the trial and what it means to take part.
Having investigations and treatment for cancer can be a very stressful experience.
You may have many emotions| including anxiety, anger and fear. These are all normal reactions and are part of the process many people go through when they are trying to come to terms with their condition.
Many people find it helpful to talk things over with their doctor or nurse, or with one of our cancer support specialists|. Close friends and family members can also offer support.
This section has been compiled using information from a number of reliable sources, including:
For answers, support or just a chat, call the Macmillan Support Line free (Monday to Friday, 9am-8pm)
If you have any questions about cancer, need support or just want someone to talk to, ask Macmillan.