Pen & Paper
147 East Street
+(44) 09898 787624
+(44) 09898 787735
The tumor usually grows in the bowels or appendix, but it can also be found in the stomach, pancreas, lung, breast, kidney, ovaries or testicles. It tends to grow very slowly.
"Carcinoid syndrome" is the collection of symptoms some people get when a carcinoid tumor – usually one that has spread to the liver – releases hormones such as serotonin into the bloodstream.
About 1,200 people are diagnosed with a carcinoid tumor each year in the UK, but it's thought that less than 1 in 10 of them will have carcinoid syndrome Carcinoid syndrome.
Signs and symptoms
In the early stages of having a carcinoid tumor, you may not have any symptoms. You may also not have symptoms if the tumor is just in your digestive system, as any hormones it produces will be broken down by your liver.
If symptoms do develop, they tend to be fairly general and can be easily mistaken for signs of other illnesses.
Symptoms may result from both the tumor itself and from any hormones it releases into the bloodstream.
Symptoms caused by the tumor
Symptoms will depend on where in the body the tumor develops:
A bowel carcinoid tumor may cause tummy pain, a blocked bowel (diarrhoea, constipation, feeling or being sick) and bleeding from the bottom (rectal bleeding).
A lung carcinoid tumor may cause a cough, which may make you cough up blood, and cause wheezing, breathlessness, chest pain and tiredness.
A stomach carcinoid tumor may cause pain, weight loss, tiredness and weakness.
Some tumors may not cause any symptoms and are discovered by chance. For example, an appendix carcinoid tumor may only be found when the appendix is being removed for another reason.
Symptoms caused by the hormones (carcinoid syndrome)
Typical symptoms of carcinoid syndrome include:
diarrhoea, tummy pain and loss of appetite
flushing of the skin, particularly the face
fast heart rate
Breathlessness and wheezing
These symptoms may come on unexpectedly, as the hormones can be produced by the tumor at any time.
Some people may also develop carcinoid heart disease, where the heart valves thicken and stop working properly. There is also a risk of developing a rare but serious reaction called a carcinoid crisis, which involves severe flushing, breathlessness and a drop in blood pressure.
What causes carcinoid tumors?
It's not known exactly why carcinoid tumors develop, but it's thought that most occur by chance.
Your chances of developing a carcinoid tumor may be increased if you have:
a rare family syndrome called multiple endocrine neoplasia type 1 (MEN1)
parents or siblings with a carcinoid tumor
parents with squamous cell skin cancer, non-Hodgkin's lymphoma, or cancer of the brain, breast, liver, womb, bladder or kidney
conditions called neurofibromatosis or tuberous sclerosis
You can read more about the possible risk factors for carcinoid tumors on the Cancer Research UK website.
Diagnosing carcinoid tumors
A carcinoid tumor may be found incidentally – for example, as a surgeon is removing an appendix. In this case, the tumors will often be caught early and removed along with the appendix, causing no further problems.
Otherwise, people usually see their GP after they have developed symptoms, and a carcinoid tumors may be diagnosed after carrying out a series of scans and tests, which may include measuring the amount of serotonin in your urine and having an endoscopy.
You can read more about the tests for carcinoid tumors on the Cancer Research UK website.
Treating carcinoid tumors and carcinoid syndrome
If the tumor is caught early, it may be possible to completely remove it and cure the cancer altogether. Otherwise, surgeons will remove as much of the tumor as possible (debulking).
You can read more about the surgery for carcinoid tumors on the Cancer Research UK website.
If the tumor cannot be removed, but it's not growing or causing symptoms, you may not need treatment straight away – it might just be carefully monitored.
If it's causing symptoms, you may be offered one of the following treatments:
injections of medicines called somatostatin analogues, such as octreotide and lanreotide, which can slow down the growth of the tumor radiotherapy to kill some of the cancer cells – Cancer Research UK has more information on the two main options:
targeted radiotherapy and external beam radiotherapy
a procedure to block the blood supply to the tumors (for tumours in the liver), known as hepatic artery embolisation
a procedure that uses a heated probe to kill cancer cells (for tumours in the liver), called radiofrequency ablation
chemotherapy to shrink the tumors and control your symptoms
Symptoms of carcinoid syndrome can be treated with injections of octreotide and lanreotide. You may also be given medication to widen your airways (to relieve wheezing and breathlessness) and anti-diarrhoea medication.