What are neuroendocrine cancers?
Neuroendocrine cancers are a complex, rare group of cancers that start in what is known as the neuroendocrine system — the appendix, bowel, pancreas, lungs, stomach, ovaries, kidneys or testicles. The neuroendocrine system controls how the nervous system — the brain, spinal cord and nerves — works with the hormonal (endocrine) system.
Neuroendocrine cancers can be slow growing or more aggressive. They most commonly form in the digestive system and the lungs.
Neuroendocrine cancers are also known as carcinoids (cancer like), a term that is being phased out.
What are the symptoms of neuroendocrine cancers?
Many neuroendocrine cancers do not cause symptoms. The symptoms occur if and when the tumour releases certain chemicals into your bloodstream. This is called carcinoid syndrome. 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
Sometimes people with a neuroendocrine cancer have a particularly bad episode of carcinoid syndrome triggered by stress, general anaesthetic or certain treatments. This is called a 'carcinoid crisis'.
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.
How are neuroendocrine cancers diagnosed?
If your doctor suspects you have a neuroendocrine cancer, they may:
- do a physical examination
- ask you some questions about your symptoms
- request urine tests to check for high levels of hormones, such as serotonin, which are commonly secreted by neuroendocrine cancers
- request blood tests to check for high levels of the protein chromogranin A, which is commonly secreted by neuroendocrine cancers
You might have x-rays, an ultrasound or other scans — such as a nuclear medicine scan (MIBG) — to identify the site of the tumour, and to check whether it has spread. A sample of tissue (a biopsy) may be taken from the suspected tumour for further testing.
If the test results confirm that you have a neuroendocrine cancer, you can find out more from your doctor. Questions you should ask the doctor include:
- Where are the tumours that are causing my neuroendocrine cancer?
- 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 are neuroendocrine cancers treated?
Some people receive no treatment for a neuroendocrine cancer, 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 symptoms
- suggest 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 neuroendocrine cancer
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.
Consider 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.
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Resources and support
For general information about neuroendocrine cancers, visit the Cancer Council Victoria website.
For local support groups, see the NeuroEndocrine Cancer Australia website.
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 2021