Referral to a specialist for symptoms of neuroendocrine cancer

Your GP should arrange for you to see a specialist or have tests if you have symptoms that could be due to cancer. Depending on your situation, this might be an urgent suspected cancer referral.

You will see a specialist or have tests as soon as possible. Ask your GP when this is likely to be.

Seeing your GP

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.

Urgent referral

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 hormones .

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 can read more about neuroendocrine cancer symptoms in the section for each type of neuroendocrine cancer.

Which specialist do I see for neuroendocrine cancer?

Your GP looks at your symptoms and decides which type of specialist to refer you to. For example:

• you see a gastroenterologist 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.

Referral to the neuroendocrine team

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.

Your MDT might include:

• an oncologist
• 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 dietician
• a Clinical Nurse Specialist (CNS) – who helps answer your questions and supports you
• a radiologist
• 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.

Risks and causes

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. 

If you're still worried

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. 

What should you do if you don’t get an appointment?

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.

Waiting times

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.