Neuroendocrine tumours (NETs)

If you’re affected by a neuroendocrine tumour (NET), you may have many questions about how it is diagnosed, treatment options, side effects and how to stay well. You can find trustworthy information about all aspects of your experience below.

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What are neuroendocrine tumours (NETs)?

Learn how and where neuroendocrine tumours (NETs) form, the different types of NETs, what causes NETs, and who gets NETs.

Symptoms

Learn about the common symptoms of NETs and when to see your doctor.

Getting diagnosed

Find out about the tests for NETs, how NETs are diagnosed and staged, and who will provide your care.

Treating NETs

Learn about the main treatment options for NETs, including surgery, chemotherapy, targeted therapy, precision radiation therapy (PRRT) and drug therapy.

Managing side effects

Find out about the possible impacts of NETs and their treatment, and how to manage these.

Life after treatment

Learn about follow-up care, what happens if the cancer returns, and how to look after your physical and mental health.

Questions for your doctorAsking your doctor questions will help you make informed decisions. Here's a list of questions you may want to ask.

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Diagnosis

What type of NET do I have? Where is it located?
How far has it spread? What stage of cancer do I have?
What grade is my tumour/tumours?
Have you treated this type of cancer before?

Treatment, side effects and follow-up care

What are the treatment options for me? What do you recommend and why?
What is the goal of treatment for my type of NET?
What are the possible risks and side effects of my treatment? How will these be managed?
What impact will treatment have on my fertility?
How long will treatment take?
Is this treatment covered by Medicare/private insurance? Will there be extra expenses?
If the cancer comes back, how will I know?

If you are thinking of taking part in a clinical trial, here are some questions you could ask:

What are the possible benefits and risks to me?
What is being tested and why?
How many people will be involved in this trial?
If I cannot get onto a clinical trial can I still pay for a drug that is currently in trial?

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