This website is intended for an international audience, excluding the UK, United States, Canada and France
This website is intended for an international audience, excluding the UK, United States, Canada and France
Information about the emotional, physical and social challenges of living with NETs.
Steve
If you’re living with neuroendocrine tumours (NETs) and you’re looking for clinics in your region and patient support services, then you’ve come to the right place. Search through the Get Support resources listed here to see if any of these can help you.
It is likely that your doctor will use a combination of tests and scans to properly diagnose, monitor and treat the neuroendocrine tumours (NETs) that you have.
Here you will find a list of the diagnostic tests that may be performed, which include taking your medical history and performing a physical examination.
Your doctor may also take a biopsy to see what type of NETs you have. Other tests, such as tumour marker tests and some imaging methods, including nuclear medicine scans, may be used to diagnose and monitor your condition long term.
It is up to your doctor to decide which tests are best performed in your case, and he or she may choose several or none of the below listed test methods, which are not exhaustive.
View some key facts about a patient’s typical journey with NETs in this infographic.
“There are a number of different techniques in diagnosing neuroendocrine tumours”
The healthcare professional shown in this video speaks about their own opinions and experiences and not about any specific patient. Some treatment options may not be authorized or available in your country. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of NET. No information within this video constitutes medical advice.
“Before my diagnosis I was very tired. This is the reason why I went to the doctor.”
Opinions expressed in this video are purely individual, personal opinions of the patient and by no means constitute advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“You always need to take tissue (biopsy) to ensure that it is a neuroendocrine tumour.”
The healthcare professional shown in this video speaks about their own opinions and experiences and not about any specific patient. Some treatment options may not be authorized or available in your country. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of NET. No information within this video constitutes medical advice.
“My diagnosis was triggered when I said to a nurse that I’d lost some weight…”
Opinions expressed in this video are purely individual, personal opinions of the patient and by no means constitute advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“Suspicion of NETs is usually based on symptoms for tumours that produce hormones (functioning NETs).”
The healthcare professional shown in this video speaks about their own opinions and experiences and not about any specific patient. Some treatment options may not be authorized or available in your country. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of NET. No information within this video constitutes medical advice.
“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…”
Opinions expressed in this video are purely individual, personal opinions of the patient and by no means constitute advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
“If you have a tumour that is not giving symptoms because of the low growing tumour rate, it is not easy to diagnose.”
The healthcare professional shown in this video speaks about their own opinions and experiences and not about any specific patient. Some treatment options may not be authorized or available in your country. Each person’s case is unique and you should always consult a doctor for information and advice about the diagnosis and treatment of NET. No information within this video constitutes medical advice.
The tests that may be considered are shown in the table below
| Medical history | Personal and family medical history |
| Biopsy | Fine needle biopsy Core biopsy |
| Tumour marker tests | Blood and urine tests |
| Imaging methods | Ultrasound Computed tomography (CT scan) Digestive endoscopy and endoscopic ultrasound Magnetic resonance imaging (MRI scan) Echocardiography |
| Nuclear medicine scans | Octreotide scan or somatostatin receptor scintigraphy Positron emission tomography (PET) scan – can be combined with CT scan or MRI scan. Types of PET scan include a Gallium-68-DOTA PET scan and a FGD-PET scan. MIBG scan Bone scan (bone scintigraphy) |
| Other tests | Bronchoscopy 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.
If your doctor suspects NETs he or she might take a tissue sample from the suspected tumour in your body. This is usually carried out using a core biopsy or fine needle biopsy in which a 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 helps to grade your NET.
The Ki-67 index indicates how fast the cells are dividing (proliferating). A proliferation index of less than 3% (Ki-67 less than 3%) means that the tumour is growing very slowly, while an index higher than 20% (Ki-67 greater than 20%) 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 can be 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.
Review the resources used to create the content in this section >
Diagnosing NETs
This section describes the most common and probable diagnostic or testing methods that you may undergo if your doctor suspects that you have neuroendocrine tumours (NETs).
Learn about the different types of NETs, symptoms of NETs, their diagnosis and treatment.
Learn About NETs
Read about treatment options for NETs, including surgery, radiotherapy and medications.
Treatment Options
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