Neuroendocrine Tumours

About the Condition

Neuroendocrine tumours (NETs) are rare tumours that can occur in the cells of the neuroendocrine system. The neuroendocrine system is made up of nerve and gland cells. It produces hormones and releases them into the bloodstream. NETs can be malignant or benign and are usually slow growing.

NETs are known as functioning tumours, if they produce hormones that cause specific symptoms. There are a number of different types of NETs:

  • GEP NETs (Gastroenteropancreatic neuroendocrine tumours) – develop in the gut or pancreas
  • GI NETs (Gastrointestinal neuroendocrine tumours) – develop in the digestive system
  • pNETs (Pancreatic neuroendocrine tumours) – develop in the pancreas
  • Pulmonary neuroendocrine tumours develop in the lungs


NETs can also develop in other parts of the body, but this is rare.

The risk of developing an NET is increased if you have any of the following conditions or syndromes:

  • Multiple endocrine neoplasia type 1 (MEN 1) – a rare inherited condition where tumours in the endocrine system develop
  • Neurofibromatosis type 1 – a group of genetic conditions that cause tumours to grow along your nerves
  • Von Hippel-Lindau syndrome (VHL) – an inherited condition that causes blood vessels to grow abnormally



The symptoms of a neuroendocrine tumour will vary depending on where it is and the hormones it produces e.g. a tumour in the lung may cause a persistent cough or wheezing.

Functioning tumours may cause abnormally large amounts of hormones to be released into the bloodstream. This can cause symptoms such as diarrhoea, cramps, wheezing, low blood sugar, blood pressure and heart problems.

If you have any concerns about similar symptoms, it is essential that you see your doctor at once, as the chances of recovery are much higher if cancer is diagnosed early.



Various tests can be used to diagnose NETs, including blood tests, urine tests, and biopsies.
Different types of scans may also be used including:

  • An Ultrasound scan, which uses high frequency sound waves to look inside the body and produce live images on a computer display.
  • A Computerised Tomography (CT) scan, which shows a 3D image of the area being looked at
  • A Magnetic Resonance Imaging (MRI) scan, which is a procedure that uses a magnet, radio waves, and a computer to make a series of detailed pictures of areas inside the body
  • A Positron Emission Tomography (PET) scan, which uses a very small amount of an injected radioactive drug to show where cells are active in the body
  • An octreotide scan, where mild radioactive liquid is injected into the veins and a special camera is used to highlight any cancerous cells



Treatment of NETs depends on your individual circumstances e.g.:

  • your general health
  • where the tumour is
  • how advanced your condition is

Unfortunately, many people are only diagnosed after other parts of their body have been affected. However, it may still be possible to surgically remove the tumour, even if it has spread to other parts of your body. If surgery can’t be used to completely cure your condition, it may be used to help manage and reduce any symptoms that you have.

It may also be possible to shrink the tumour or stop further growth using treatments that block the blood supply to the tumour (embolisation), or chemotherapy, radiotherapy or radiofrequency ablation (where heat is used to destroy the cells).


Support Services

Cancer doesn’t just leave a physical impact on an individual; it can have a huge emotional effect as well. Cancer and its treatment can be overwhelming, causing a wide variety of emotions, and it is important to remember that there is no right or wrong response. Reactions vary hugely from person to person, and most people find that it becomes easier to cope when they’re given additional support, so that’s what we do.


At CCL we provide support that caters to both the physical and emotional needs of the patient, before, during and after treatment. We offer a wide range of services for patients, as well as their loved ones, designed to make a very difficult time as easy as possible, and to give our patients the best treatment and support possible.

Neuroendocrine Tumours Consultants