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.

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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