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Neuroendocrine Tumours (NETs)

  • Neuroendocrine tumours (NETs) are relatively rare cancers. They start in a person’s neuroendocrine cells, found throughout the body. NETs can be cancerous (malignant) or non-cancerous (benign). They often grow slowly, but not always.
  • Different types of NETs are named based on the place in the body where they develop:
    • NETs can develop in organs of the gastrointestinal (GI) tract, including small intestine, rectum and stomach, colon, esophagus and appendix. These types of tumours are called GI NETs.
    • NETs can also develop in the lungs (called lung NETs) or the islet cells of the pancreas (called pancreatic NETs or pNETs).
    • Other types of NETs include thyroid cancer, pheochromocytoma (adrenal gland) and Merkel cell carcinoma (skin).

To learn more about neuroendocrine tumours, visit the Canadian Cancer Society.

What’s on this Page

You will find Ontario Health (Cancer Care Ontario) information, resources and tools for:

  • patients, families and caregivers
  • anyone interested in NETs
  • healthcare providers

You will also find links to other organizations that provide information related to neuroendocrine tumours.

Prevention

Most cases of neuroendocrine tumours (NETs) have no known cause. However, there are a few things you should be aware of that might lower your risk of getting NETs:

Know Your Medical and Family History

You may have an increased risk of getting NETs if you have:

  • certain rare genetic conditions
  • family history of any type of cancer, especially in a parent, sibling or child

Do Not Smoke

As with many cancers, smoking may increase your risk.

It’s never too late to benefit from becoming smoke-free. If you are already a non-smoker, keep yourself safe by avoiding exposure to other people’s tobacco smoke (second-hand smoke). It may take several tries to quit smoking. If you’ve tried to quit in the past and have started smoking again, don’t give up. Each time you try to quit, you get closer to your goal of being smoke-free forever.

To find information on how to quit smoking visit:

For more information on what increases your risk of getting NETs, visit the Canadian Cancer Society.

Diagnosis

During diagnosis, a person may need many tests to confirm the cancer. Waiting for test results to come back can be stressful. Talk to your doctor or nurse practitioner about managing stress during this difficult time.

Starting the Diagnostic Process

Not everyone follows the same diagnostic process. Consult with your doctor about neuroendocrine tumours (NETs) diagnosis.

Some people with NETs have imaging with positron emission tomography (PET) using a specialized imaging agent (Gallium-68 DOTATATE). Others may have their blood or urine checked for biochemical markers (certain proteins and hormones), which can help diagnose NETs.

For more information about diagnostic tests, you can visit the Canadian Cancer Society.

For more information about PET scanning, you can visit PET Scans Ontario.

Treatment

Treatment for neuroendocrine tumours (NETs) will depend on:

  • type of cancer
  • the stage of cancer
  • which treatments the person chooses to have

Treatments may include:

  • surgery
  • drug therapy (chemotherapy)
  • radiation therapy
  • liver directed therapy
  • radionuclide therapy

The diagnostic tests you have will help determine your treatments. Your healthcare team will discuss the treatment options with different specialists to make sure you are receiving the right care at the right time.

To learn more about types of NETs treatment, visit the Canadian Cancer Society.

Drug Therapy Information

You can learn more about specific cancer drugs using our patient information sheets. These provide information about cancer drug therapies, including what they are used for and how to manage side effects. To find patient information sheets, go to the Drugs page.

You can also visit About Chemotherapy for general information about cancer drug therapy.

Radionuclide Therapy

Some people with NETs may have a type of specialized therapy called radionuclide therapy. It may be recommended in these circumstances:

  • The tumour cannot be removed with surgery
  • Some cancer is left behind after surgery or other procedure to remove the tumour
  • The cancer has spread (metastasized)

To learn more, see radionuclide therapy for neuroendocrine tumours, or visit the Canadian Cancer Society.

Managing Symptoms and Side Effects

People with cancer may have symptoms related to their cancer or as a side effect of treatment.

Our symptom management guides explain:

  • how to recognize symptoms
  • what to do and what not to do
  • when to contact the person’s healthcare team

The guides are available for patients and for healthcare providers. Each patient guide also comes with links to helpful resources like courses, books, videos and worksheets.

Our side effect information sheets offer tips for people who have side effects from chemotherapy treatment.

If you are a person with cancer, please remember that it is important to discuss any symptoms or concerns with your healthcare team.

To find symptom management guides and links, see Managing Symptoms, Side Effects & Well-Being

Clinical Trials

Clinical trials are scientific studies that test the safety and effectiveness of a medical treatment. Find clinical trials in Canada:

Palliative Care

Palliative care supports people with life-threatening illness and their families. The goal of this care is to relieve suffering so people can have the best possible quality of life. Palliative care should start when a person is diagnosed with a serious illness.

To learn more, see Palliative Care.

After Treatment

When treatment ends, a person moves into a new phase of their cancer experience. For many patients, a lot of the after-treatment care will be given by healthcare providers in the community, like a family doctor or nurse practitioner.

Follow-Up Care

Follow-up care is the care given after active treatment for NETs is over. It focuses on:

  • helping the person recover from the cancer and treatments
  • finding cancer early if it comes back

To learn more about follow-up care, visit the Canadian Cancer Society.

Managing Ongoing Symptoms

A person may have symptoms from cancer for months or years after treatment has ended. These are called long-term effects or late effects.

If you have ongoing symptoms after being treated for cancer, you can find information on how to manage them in our symptom management guides. Download the guides at Managing Symptoms, Side Effects & Well-Being.

To better understand the late or long-term effects of cancer treatment, visit the Canadian Cancer Society for a helpful overview.

End-of-Life Care

Each person has a different experience during their final months and days of life. Their symptoms may change as their illness continues, and their needs for information and support will be unique. Family members will also have questions, concerns and needs of their own.

If you are helping a family member through their final months of life, talk to your healthcare team about your questions and concerns as they come up. They can give you information and resources to support you and your family, and help you make decisions and plan for end-of-life care.

For more information, see Palliative Care.