“There are a number of different techniques in diagnosing neuroendocrine tumours”
“Before my diagnosis I was very tired. This is the reason why I went to the doctor.”
“You always need to take tissue (biopsy) to ensure that it is a neuroendocrine tumour”
“My diagnosis was triggered when I said to a nurse that I’d lost some weight…”
“Suspicion of NETs is usually based on symptoms for tumours that produce hormones (functioning NETs)”
“When I had this pain in my side, I was told to get into hospital as soon as I could. I saw my GP [General Practitioner] the next morning…”
“If you have a tumour that is not giving symptoms because of the low growing tumour rate, it is not easy to diagnose.”
The tests that may be considered are shown in the table below
|Medical history||Personal and family medical history|
|Biopsy||Fine needle biopsy|
|Tumour marker tests||Blood and urine tests|
|Computed tomography (CT)|
|Digestive endoscopy and endoscopic ultrasound|
|Magnetic resonance imaging (MRI)|
|Scintigraphy scans||Octreotide scan or octreotide scintigraphy or somatostatin receptor scintigraphy|
|Bone scan (bone scintigraphy)|
|Positron emission tomography (PET) (can be combined with CT or MRI)|
|Lung function tests|
Before performing any tests for NETs, your doctor will probably ask questions about your medical history.
This is a record of present symptoms, risk factors and the medical events and problems that you have had in the past. The medical history of your relatives may also help the doctor to diagnose neuroendocrine cancer.
When taking a medical history, your doctor may ask questions about:
A physical examination will also allow your doctor to look for any signs of NETs and any areas of pain or tenderness, or any lumps or bumps.
It your doctor suspects NETs they might take a tissue sample from the suspected tumour in your body. This is usually carried out using a method called ‘fine needle biopsy’, in which a thin needle is inserted into the body to remove the tissue – similar to taking a blood sample.
You’ll receive a local anaesthetic to numb the biopsy site first. The sample will then be examined by a pathologist, who will analyse it under a microscope to confirm the presence of the tumour and describe their characteristics.
In some cases, the pathologist may give your tumours a proliferative index that you may see noted as ‘Ki-67’.
This indicates how fast the cells are dividing (proliferating). A proliferation index of less than 2% (Ki-67 less than 2%) means that the tumour is growing very slowly, while an index higher than 10% (Ki-67 greater than 10%) suggests it has a faster growth rate.
Remember that, even if the Ki-index shows that your tumour has a faster growth rate than normal, NETs are relatively slow growing and many factors are needed to determine your likely long-term outcome. The doctor may use this test to determine what treatment is necessary and repeat the test periodically to monitor the effects of certain treatments for NETs that you may receive.
Read about keeping track of your medical care, where you can download a copy of the Living with NETs Medical Details and Treatment Tracker as either a Word file that you can edit, or a read-only PDF.
Learn about carcinoid tumours, GI-NETs, pancreatic NETs and lung NETs, and the symptoms of NETsLearn About NETs
Read about treatment options for NETs, including surgery, radiotherapy and medicationsTreatment Options
Have a question about NETs? See if it has been answered by one of our experts