What is carcinoid syndrome?
Carcinoid syndrome is a group of symptoms caused by a rare type of cancer known as carcinoid. If you suspect that you are suffering from carcinoid syndrome, make an urgent appointment with your doctor.
A carcinoid tumour is a slow-growing cancer that starts in what is known as the neuroendocrine system – the appendix, bowel, pancreas, lungs, stomach, ovaries, kidneys or testicles. These tumours are also known as neuroendocrine tumours, or NETs.
A carcinoid tumour grows slowly and spreads slowly. It can release chemicals that give rise to carcinoid syndrome, usually after it has spread.
What are the symptoms of carcinoid syndrome?
The symptoms occur if and when the carcinoid tumour releases certain chemicals into your bloodstream. These symptoms, which tend to come and go, might be mild or they might be very troublesome. They include:
- skin flushing – your face and chest might feel hot, making the skin turn pink, red or purple, for anywhere between a few minutes and a few hours
- skin lesions – purplish areas of small spiderlike veins on your face
- diarrhoea – it can be severe, frequent and watery, sometimes with cramps
- difficulty breathing, wheezing or shortness of breath
- a rapid heartbeat
- dizziness when you stand up or bend down because of low blood pressure
Call triple zero (000) for an ambulance, or go immediately to your nearest hospital emergency department if you are suffering from severe episodes of blushing, find it really difficult to breathe, or you are feeling very confused. This could indicate you are experiencing a life-threatening carcinoid crisis.
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How is carcinoid syndrome diagnosed?
If your doctor suspects carcinoid syndrome, they will:
- do a physical examination
- ask you some questions about your symptoms
- request urine tests to check for high levels of serotonin, which is commonly secreted by carcinoid tumours
- request blood tests to check for high levels of the protein chromogranin A, which is commonly secreted by carcinoid tumours
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If the test results confirm that you have carcinoid syndrome, you can find out more from your doctor. Questions you should ask the doctor include:
- Where are the tumours that are causing my carcinoid syndrome?
- What treatment do you recommend?
- What can I do to control my symptoms?
- Is there anything I should avoid eating or drinking?
- Are there any other signs or symptoms that I should watch out for?
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How is carcinoid syndrome treated?
Some people receive no treatment for a carcinoid tumour, especially if it is small and causing them no problems. But your doctors might:
- recommend surgery, chemotherapy or radiation, either alone or in combination
- give you some medications to control your most bothersome carcinoid syndrome symptoms
- suggest some changes to the food you eat and drink – alcohol, nuts, cheese, spicy food and hot liquids can all trigger carcinoid symptoms in people who have the tumour
Living with carcinoid syndrome
It may have taken you a while to find out that the symptoms you have been aware of for some time are connected. You may also need some time to adjust to this news.
It might be worth thinking about adding mind-body techniques such as relaxation, meditation, art therapy or mindfulness to help you manage your health.
It may also be worth seeing a dietitian who can help you manage any necessary changes to your diet. Go to healthdirect’s service finder to find a dietitian close to you.
Resources and support
For information about carcinoid tumours and carcinoid syndrome, as well as local support groups and advocacy, visit the NeuroEndocrine Cancer Australia website.
Cancer Council Victoria also provides general information carcinoid tumours.
For an international online support and discussion group for carcinoid cancer and carcinoid syndrome, visit the US Carcinoid Cancer Foundation website.
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Last reviewed: April 2019