Getting diagnosed

You see your GP and have some tests to diagnose a lung neuroendocrine tumour (NET). This might include blood tests and a chest x-ray.

Your GP will then decide if you need to see a specialist.

Referral to a specialist

Your GP looks at your symptoms and decides what specialist to refer you to. For example, they might refer you to a chest or respiratory specialist if you have symptoms related to your breathing.

But up to half of people with a lung NET do not have any symptoms. And some have symptoms caused by hormones. So you may be diagnosed with a lung NET during tests for another condition.

If tests show that you have a lung NET, your specialist will refer you to a team of doctors and specialist nurses who have expertise in treating lung NETs.

Tests

You have tests to check the type of NET you have, the size of the tumour and whether it has spread. This helps your doctor plan your treatment.

Blood tests

Blood tests can check your general health. They can also check the levels of certain substances in the blood which are sometimes raised with NETs.

Urine test

Certain lung NETs release high amounts of serotonin. This breaks down into a substance called 5-HIAA. Your doctor can test for this in your wee (urine) or you might have this as a blood test.

Chest x-ray

A chest x-ray looks for anything abnormal in your lungs.

CT scan

This scan can show up a NET and see whether it has spread anywhere else in your body. You usually have a CT scan of your chest, tummy (abdomen) and pelvis.

PET scan

A PET scan can show the size of a lung NET and whether it has spread.

Radioactive scans

These are octreotide scans (or octreoscans) and MIBG scans. You have an injection of a low dose radioactive substance, which is taken up by some NET cells. The cells then show up on the scan.

MRI scan

An MRI scan takes detailed pictures of your body. You might have an MRI scan to check if your lung NET has spread to other parts of the body such as the liver and bones.

PET-CT scan

A PET-CT scan combines a CT scan and a PET scan. You might have a PET-CT scan to check if your lung NET has spread to the lymph nodes.

Bronchoscopy

This test looks at the inside of the breathing tubes in your lungs (the airways). Your doctor may take tissue samples (biopsies) if they see anything abnormal.

Bronchoscopy and ultrasound (endobronchial ultrasound)

You might have this test if your doctor has seen an abnormal looking area in your lung. Your doctor uses a narrow flexible tube (bronchoscope) and an ultrasound probe to look inside the breathing tubes in your lungs. They can take samples (biopsies) of the abnormal areas to test.

Surgical biopsy

Your surgeon takes a sample of tissue during an operation called a thoracotomy. You might have this for a lung tumour that is hard to reach.

Tests to check your heart

You might have a test to check for changes in your heart rhythm (an electrocardiogram) or an ultrasound scan of the heart (echocardiogram).

Tests to check your breathing

These are also called functional respiratory tests. They check how well your lungs work.