It can be overwhelming after being told that you have or may have a neuroendocrine tumour (NET). A lot can happen quickly, and you might have lots of questions, like 'What happens next after a diagnosis?'

This support resource can help to guide you, your family, and your friends through this experience.

Information and support

If you need additional information or would like support, you can visit the neuroendocrine tumours page or call Cancer Council on 13 11 20 to talk to an experienced healthcare professional.

For information or to talk to a cancer nurse, call 1300 287 363 or visit the NeuroEndocrine Cancer Australia webpage.

If you need a translator, call TIS on 13 14 50 or visit the TIS National website.

1. Initial investigation and referral

Symptoms

Your general practitioner (GP) should do a check-up to see if they can find what is making you unwell. They will ask you about any symptoms you might be having such as abdominal pain, bloating, flushing, feeling tired, diarrhoea (even while not eating), wheezing, rapid heartbeat and unexplained weight loss.

Initial tests you may have:

Physical check

Your GP will check your stomach and listen to your heart and lungs.

Blood test

A sample of your blood will be taken. Tests will include full blood count, liver function and tumour markers.

Ultrasound

Sound waves are used to create a detailed picture of the area being investigated.

Computed tomography (CT) scan

Computers and x-rays are used to create a detailed picture of the area being investigated.

Chest x-ray

An x-ray takes a picture of the chest.

You may have additional tests to these.

Referrals

If your GP has concerns, you will be referred to a medical oncologist, gastroenterologist or respiratory physician at a public hospital or in private practice for more tests. Medical oncologists, gastroenterologists and respiratory physicians are specialists who are highly trained in treating NETs.

You can bring a family member or friend with you to your appointments.

Timeframes

You should be referred to an appropriate specialist within one week of completing initial investigations. If you haven’t been referred within this time, follow up with your GP.

Questions you might want to ask

  • Can I choose whether I go to a public hospital or private practice?
  • Can I choose the specialist I see?
  • How much will appointments cost me?

2. Diagnosis and staging

The specialist will do more tests to see if you have melanoma. Most biopsies sent to a pathology laboratory confirming a melanoma diagnosis happen in general practice. This process of working out if you have a medical problem is called making a diagnosis.

You might have one test or a mix of tests:

Colonoscopy

A small camera on a tube is put into your bottom to check your large bowel. Your specialist or GP will tell you what you need to do to prepare for this test. You will have sedative medicine or a general anaesthetic (you will be put to sleep) so you cannot feel it.

Endoscopy

A small camera is inserted down your throat and into your digestive tract. You will have sedative medicine or a general anaesthetic (you will be put to sleep) so you cannot feel it.

Bronchoscopy

A small camera is inserted in your nose or mouth down to your airways. You will have sedative medicine or a general anaesthetic (you will be put to sleep) so you cannot feel it.

Blood tests

Further samples of blood are taken to check specific biomarkers and hormones depending on the symptoms you are experiencing.


Biopsy

A sample of tissue is taken to check under the microscope. This will give the grading (type of tissue) of the tumour. Grading also helps to work out the best treatment for you.

Genetic testing

Some subtypes of cancer suggest an underlying inherited susceptibility.

Magnetic resonance imaging (MRI) scan

A scan where a powerful magnet and radio waves are used to make a detailed picture of the body.

Positron emission tomography/ computed tomography (PET/CT) scan

A small amount of radioactive material is injected and your whole body is scanned to show where the cancer is.

These tests will give the specialist more information about the cancer, such as where exactly it is in your body, if the cancer is growing or has spread, and what stage it is at. This is called staging, which helps to work out the best treatment for you.

Timeframes

Results should be available within two weeks from when you have the tests.

Questions you might want to ask

  • What is a neuroendocrine tumour?
  • What tests will I have?
  • How much will tests/appointments cost?
  • Where should I be treated, and do I have a choice?
  • What stage is my cancer?
  • What support services are available to me?

3. Treatment

There are several ways to treat NETs. Your specialist will talk to you about your treatment options.

You will be treated by a team of experts, and you may need more than one treatment type to get the best results. The team will work with you and your family or carer to plan your treatment.

You might have one treatment or a mix of treatments:

Surgery is where the cancer is cut out. Some tumours can be completely removed. In other cases, only some of the tumour can be removed, which can reduce symptoms.

Active surveillance / watch and wait may be suitable for some people who have no symptoms or problems.

Radiation therapy uses x-rays to kill cancer cells and stop the cancer growing. It is used to treat metastases such as in the bone.

Peptide receptor radionuclide therapy (PRRT) is a radiopharmaceutical treatment used to control symptoms and growth of the tumour.

Somatostatin analogues (SSAs) are injections given monthly to reduce symptoms or control growth of the tumour. It is a common treatment for people with NETs.

Chemotherapy uses drugs to kill cancer cells and stop the cancer growing. It might be used before surgery, after surgery or alone. Chemotherapy might be used alone, or with radiation therapy.

Targeted therapy uses drugs to attack specific features of cancer cells and stop the cancer growing. It may be used to treat some advanced NETs.

Liver-directed therapy uses heat or chemicals to kill the cancer. It is used to directly treat cancer that has spread to the liver. Treatment types include radiation, chemotherapy and ablation.

Immunotherapy is a type of cancer treatment that helps the body’s immune system to fight the cancer. It is currently being studied in NETs.

For more information, visit Cancer Treatment or the information booklet from NeuroEndocrine Cancer Australia. Supportive care (treatment or services that support you through a cancer experience) are also available.

Timeframes

Treatment should start within four weeks of agreeing to your treatment plan.

You can ask your GP for a referral to another specialist for a second opinion.

Clinical trials

You may be offered to take part in a clinical trial. Clinical trials are used to test whether new treatments are safe and work better than current treatments. Many people with cancer are now living longer, with a better quality of life, because of clinical trials.

Complementary therapies

Speak to your healthcare team about any complementary therapies (including dietary supplements like vitamins) you use or would like to use. Something as common as vitamins might not work well with your treatment.

For more information on clinical trials, visit the Australian Cancer Trials page.

Questions you might want to ask

  • What treatment do you recommend?
  • Where will I have to go to have treatment?
  • What will treatment cost and how much of the cost will I have to pay myself?
  • What activities/exercise will help me during and after treatment?
  • Can I still work?
  • How will the treatment affect my day-to-day life?
  • Who are the people in my team and who is my main contact person?
  • What side effects could I have from treatment?
  • Who do I contact if I am feeling unwell or have any questions?
  • Will treatment affect my ability to have a child?

4. After treatment

Recovery

Cancer treatment can cause a range of physical and emotional changes.

Follow-up care plan

Your healthcare team will work with you to make a plan for you and your GP. This plan will explain:

  • who your main contact person is after treatment
  • how often you should have check-ups and what tests this will include
  • understanding and dealing with side effects of treatment
  • how to get help quickly if you think the cancer has returned or is worse

Many people worry that the cancer will return. Your specialist and healthcare team will talk with you about your needs and can refer you to other healthcare professionals and community support services.

Other information you may get:

  • signs and symptoms to look out for if the cancer returns
  • late effects of treatment and the specialists you may need to see
  • how to make healthy lifestyle choices to give you the best chance of recovery and staying well

For more information, visit After Cancer Treatment or the NET Treatment and Wellness Care Plan.

Questions you might want to ask

  • Who should I contact if I am feeling unwell?
  • What can I do to be as healthy as possible?
  • Where can I get more help?

5. If cancer returns

Sometimes, NETs can come back after treatment. It can come back in the same place or can appear somewhere different in your body.

If cancer returns, you may be referred to the specialist or the hospital where you were first treated, or to a different specialist.

Treatment will depend on how far the cancer has spread, how fast-growing it might be, and the symptoms you are experiencing.

Questions you might want to ask

  • Where is the cancer and has it spread?
  • What are my treatment options?
  • What are the chances that the treatment will work this time?
  • Is there a clinical trial available?
  • Where else can I get support?

Advance care planning

Your GP or healthcare team may talk with you, your family, and carer about your future treatment and medical needs.

Advance care directive

Sometimes known as a living will, an advance care directive is a legally binding document that you prepare to let your family and healthcare team know about the treatment and care you might want or not want in case you become too unwell to make those decisions yourself.

For more information, visit Advance Care Planning Australia.

Palliative care

Your specialist may refer you to palliative care services, but this doesn’t always mean end-of-life care. Today, people can be referred to these services much earlier if they’re living with cancer or if their cancer returns. Palliative care can help you to live as well as you can, including managing pain and symptoms. This care may be at home, in a hospital or at another location you choose.

Speak to your GP or specialist or visit Palliative Care Australia.

Making treatment decisions

You may decide not to have treatment at all, or to only have some treatment to reduce pain and discomfort. You may want to discuss your decision with your healthcare team, GP, family and carer.

For more information, visit Advanced Cancer Treatment.

Questions you might want to ask

  • What can you do to reduce my symptoms?
  • What extra support can I get if my family and friends care for me at home?
  • Can you help me to talk to my family about what is happening?
  • What support is available for my family or carer?
  • Can I be referred to a community support service?

6. Questions of cost

You may have to pay for some appointments, tests, medications, accommodation, travel or parking. Speak with your GP, specialist or private health insurer (if you have one) to understand what is covered and what your out-of-pocket costs may be.

If you have concerns about costs, talk to your healthcare team or a social worker about:

  • being bulk-billed or being treated in the public system
  • help with accommodation during treatment
  • the possible financial impact of your treatment

You can call Cancer Council on 13 11 20 to speak to a healthcare professional about financial support. For more information about costs, visit Practical and financial assistance and What will I have to pay for treatment.

7. Further support

Listen to audio in your language

   
Neuroendocrine tumours guide to best cancer care - English
   
Neuroendocrine tumours guide to best cancer care - Arabic | العربية
   
Neuroendocrine tumours guide to best cancer care - Simplified Chinese | 简体中文
   
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Neuroendocrine tumours guide to best cancer care - Traditional Chinese | 繁體中文
   
Neuroendocrine tumours guide to best cancer care - Korean | 한국인

Neuroendocrine tumours support

You can speak to specially trained staff at Cancer Council on 13 11 20. They can answer your questions about the effects of cancer, explain what will happen during treatment and link you to support groups and other community resources.

If you need an interpreter, call TIS (the Translating and Interpreting Service) on 13 14 50.

For support and advice for carers, call the Carers Association on 1800 242 636.

More support options

Australian Cancer Survivorship Centre

Has information resources and events to help people move from initial treatment to post treatment and beyond, including those receiving maintenance treatments

Beyondblue

Information on depression, anxiety and related disorders, available treatment and support services

Cancer Australia

Information on cancer prevention, screening, diagnosis, treatment and supportive care for Australians affected by cancer, and their families and carers

Care Search: Palliative care knowledge network

Information for patients and carers on living with illness, practical advice on how to care, and finding services

National Health Services Directory

A directory providing information on local hospital and community services

NEMICS A common path: Cancer support and advice

Videos offering support and advice from people who have been through cancer


Optimal care pathways have been developed for health professionals and health services. However patients and carers may find useful information in this version to help understand the processes their treating health professionals are following. The optimal care pathways can also be accessed in an interactive web app on your mobile or your desktop.