Follow up for stomach NETs

You have regular appointments with your doctor or nurse after treatment for your stomach neuroendocrine tumour (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.

How often you have follow up

How often you see your doctor depends on:

• your type of stomach NET
• if the NET has spread to other parts of your body
• what treatment you have had
• any side effects you have had

Type 1

If you have a type 1 stomach NET it is likely you will have endoscopy tests to check if there are any more tumours. You might have an endoscopy once a year. Or, once every 2 years, if there is no sign of your NET coming back after some time.

Type 2

You might have an endoscopy once a year if you have a type 2 stomach NET. This depends on your hospital. Your team will let you know what follow up to expect.

Type 3

People with a type 3 NET have more regular follow up. At first your checkups will be every few months. They will gradually become less frequent. The checkups are often every 3 months for 2 years and then every 6 months for the next 3 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 at some visits. As well as an endoscopy the tests might include:

• blood tests
• CT scan
• MRI scan
• radioactive scan (octreotide scan)

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.