Getting diagnosed
It can be hard for GPs to decide who may have cancer and who might have a more minor condition. For some symptoms, your doctor may ask you to wait to see if the symptoms get better. Or if they respond to treatment, such as antibiotics.
Read more about urgent referrals
For most cancer types, there are guidelines for GPs. These help them decide who needs a referral. These vary between the different UK nations.
But there aren't specific referral guidelines for neuroendocrine cancers. Neuroendocrine cancers can cause many different symptoms. These depend on the type, and where it is in your body. Symptoms also depend on whether your neuroendocrine cancer makes and releases abnormal levels of .
Your symptoms may be the same as for other types of cancer. Your GP should arrange for you to see a specialist if you have any symptoms that could be due to cancer. You will see a specialist or have tests as soon as possible. Ask your GP when this is likely to be.
Read about general signs and symptoms of cancer
You can read more about neuroendocrine cancer symptoms in the section for each type of neuroendocrine cancer.
Choose a type of neuroendocrine cancer
Your GP looks at your symptoms and decides which type of specialist to refer you to. For example:
you see a or a gastrointestinal surgeon for bowel or stomach problems
you see a chest or respiratory specialist if you have problems with your breathing
you might see an endocrinology specialist if you have hormonal symptoms
Your specialist:
asks about your medical history and symptoms
examines you
They also arrange any tests that you need. These will depend on your symptoms and the results of any tests you have already had.
Find out about the tests you might have
If the doctor suspects a neuroendocrine cancer, they will refer you to an expert team. They specialise in neuroendocrine cancers. This group of professionals is called a neuroendocrine multidisciplinary team (MDT) and are based at a neuroendocrine centre of excellence.
Neuroendocrine cancers are rare. So your neuroendocrine centre might be at a hospital a bit further away than your local hospital. There are neuroendocrine centres around the UK. You can read more about where these are on the Neuroendocrine Cancer UK website.
Visit the Neuroendocrine Cancer UK website and read about specialist centres
Your MDT might include:
an
a surgeon
an endocrinologist - a doctor specialising in problems with the endocrine (hormone) systems
a gastroenterologist
a palliative care consultant - a doctor who specialises in controlling symptoms
a
a Clinical Nurse Specialist (CNS) – who helps answer your questions and supports you
a
a hepatologist - a doctor who specialises in treating problems with the liver, pancreas, bile duct and gallbladder
The neuroendocrine specialist doctor will examine you. They review your medical history and test results. They might arrange for more tests.
Your neuroendocrine MDT work together and with your local hospital doctors. They decide on the best way to manage your care. There are different options:
You might have an appointment with the MDT at the neuroendocrine centre. Or they might arrange a telephone call with you.
The neuroendocrine MDT might provide advice and guidance to the doctors at your local hospital so you can receive treatment closer to home.
The neuroendocrine MDT might take over your care so you have your treatment at the neuroendocrine centre.
The neuroendocrine MDT might share your care between the neuroendocrine centre and your local hospital team.
Your GP might ask about any risk factors that affect your chances of developing cancer.
We don’t know what causes most neuroendocrine cancers. But there are some risks factors that can increase your risk of developing it. Having one of these risk factors doesn’t mean that you will definitely develop a cancer.
Read more about the risks and causes of neuroendocrine cancer
Sometimes you might feel that your GP is not concerned enough about your symptoms. If you think they should be more concerned, print this page and the symptoms page. Ask your GP to explain why they don’t think you need a referral.
Contact your GP again if your symptoms don't get better or you notice any new or unusual symptoms.
If your GP has referred you to a specialist, ask them when you should get your appointment. Contact them again if you don’t get one. Or some hospitals have a referral service you could try contacting if you know which hospital you are going to. Explain that you are waiting for an urgent suspected cancer referral.
Go to more information about an urgent referral, what to expect and questions to ask
Your hospital is working towards waiting time targets. For example, a target to find out whether you have cancer or not. And there are targets to start treatment if you are diagnosed with cancer. These are slightly different depending on where you live in the UK.
Last reviewed: 05 Feb 2025
Next review due: 05 Feb 2025
See your doctor if you notice a change that isn't normal for you. Our tips can help you get the most out of your GP appointment.
Your doctor organises different types of tests. These include blood tests, scans and tests to look inside your body. They might take a sample (biopsy) of the cancer.
Neuroendocrine cancers are also called neuroendocrine neoplasms (NENs). There are 2 key groups - neuroendocrine tumours (NETs) and neuroendocrine carcinomas (NECs).
Practical and emotional support is available to help you cope with neuroendocrine cancer.
Neuroendocrine cancers develop in cells of the neuroendocrine system. They can develop in different parts of the body including the lungs, stomach, pancreas and bowel.

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