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Follow up for small bowel neuroendocrine tumours

You have regular appointments with your doctor or nurse after treatment for your small bowel NET finishes. This is called follow up. 

Why you have follow up appointments

You usually have follow up appointments every few months to check how you are and see whether you have any problems or worries. The appointments also give you the chance to raise any concerns you have about your progress.

Decisions about follow up

How often you see your doctor depends on:

  • the grade of your small bowel NET
  • if the tumour has spread to other parts of your body
  • what treatment you have had
  • any side effects you have had

For most people with a small bowel neuroendocrine tumour follow up is lifelong.

How often you have appointments

You are likely to have a follow up appointment every 6 to 12 months if you have had surgery to fully remove your NET. If your tumour was grade 3 and you have had surgery to fully remove the tumour, you are seen every 3 months.

You are likely to be seen every 3- 6 months if you have a grade 1 or grade 2 tumour that doctors don’t think they can remove with surgery. Or, if you are having treatment to control your symptoms rather than to cure your NET.

What happens

Your doctor or nurse examines you at each appointment. They ask how you are feeling, whether you have had any symptoms or side effects, and if you are worried about anything.

You might also have tests at some visits. At most visits the tests include:

  • blood tests
  • urine tests
  • a CT scan

You might also have a PET/CT scan or radioactive scan (octreotide scan) at some appointments.

Between appointments

Contact your doctor or specialist nurse if you have any concerns between appointments. You should also contact them if you notice any new symptoms. You don’t have to wait until your next visit.

Many people find their check ups quite worrying. A hospital appointment can bring back any anxiety you had about your cancer.

It can help to tell someone close to you how you’re feeling. Sharing your worries can mean they don’t seem so overwhelming. Many people find it helpful to have counselling during or after cancer treatment.

You can also find people to share experiences with by using our online forum, CancerChat.

NET Patient Foundation

The NET Patient Foundation provides support and information for people with NETs and their families from diagnosis to follow up.

Cancer Research UK nurses

For support and information, you can call the Cancer Research UK information nurses on freephone 0808 800 4040, from 9am to 5pm, Monday to Friday. They can give advice about who can help you and what kind of support is available.
Last reviewed: 
02 Oct 2018
  • ENETS Consensus Guideline Update for Neuroendocrine Neoplasms of the Jejunum and Illeum 
    B Niede and others 
    Neurendocrinology, 2016 
    Volume 103

  • ENETS Consensus Guidelines for the Standards of Care in Neuroendocrine Tumors: Follow-Up and Documentation
    R Arnold and others
    Volume 90