Follow up for large bowel and rectal NETs

You usually have follow up appointments 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.

How often you have follow up

How often you see your doctor depends on:

  • the grade of the large bowel or rectal NET
  • whether it has spread to other parts of the body
  • what treatment you have had
  • any side effects you might have

Follow up for large bowel or rectal NETs smaller than 2 cm
You might not need regular follow up if the NET is less than 1 cm and doctors are able to completely remove it with surgery.

If you have a NET that measures between 1 cm and 2 cm, you usually see your doctor every year after treatment.

Follow up for large bowel or rectal NETs bigger than 2 cm
You have more regular follow up. At first the check ups will be every few months. They gradually become less often.

The checks ups are usually every 4 to 6 months for the first year. And then at least every year for 5 years.

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 on some visits. The tests might include:

  • colonoscopy
  • a CT scan or MRI scan
  • a blood test to check for the amount of chromogranin A (CgA)
  • endoscopic ultrasound (EUS)

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.

Neuroendocrine Cancer UK

Neuroendocrine Cancer UK is a UK wide charity providing support and information to those affected by neuroendocrine cancer. They also have a helpline.

Cancer Research UK nurses

For support and information, you can call the Cancer Research UK information nurses. They can give advice about who can help you and what kind of support is available. Freephone: 0808 800 4040 - Monday to Friday, 9am to 5pm.
Last reviewed: 
17 Jun 2021
Next review due: 
17 Jun 2024
  • Gastroenteropancreatic neuroendocrine neoplasms: ESMO Clinical Practice Guidelines for diagnosis, treatment and follow-up
    M. Pavel and others
    Annals of Oncology 2020, Vol 31, Issue 5 

  • ENETS consensus guidelines for the standards of care in neuroendocrine tumors: follow up and documentation
    R Arnold and others
    Neuroendocrinology, 2009. Vol 90, Pages 227-233

  • ENETS consensus guidelines for the management of patients with digestive neuroendocrine neoplasms: colorectal neuroendocrine neoplasms
    M Caplin and others
    Neuroendocrinology, 2012. Vol 95, Pages 88-97

  • Guidelines for the management of gastroenteropancreatic neuroendocrine (including carcinoid) tumors (NETs)
    J Ramage and others
    Gut, 2012. Vol 61, Pages 6-32

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