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 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 to 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.

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

This page is due for review. We will update this as soon as possible.