Neuroendocrine
tumours

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Follow-up after treatment for neuroendocrine tumours (NETs)

Follow-up after treatment is an important part of cancer care. Follow-up for a neuroendocrine tumour (NET) is often shared among the cancer specialists, such as the surgeon, oncologist and endocrinologist, and your family doctor. Your healthcare team will work with you to decide on follow-up care to meet your needs.

Don’t wait until your next scheduled appointment to report any new symptoms and symptoms that don’t go away. Tell your healthcare team if you have:

  • diarrhea
  • flushing of the skin
  • pain in the abdomen

Also report any symptoms you have that are getting worse, and let your healthcare team know how you are coping.

The chance that neuroendocrine cancer will come back (recur) is greatest within 5 years, so close follow-up is needed during this time. The risk of recurrence depends on several factors, including whether surgery was done, the size of the tumour, if there was cancer in the lymph nodes and how fast the cells are growing and dividing.

Schedule for follow-up visits

Follow-up visits for NETs are usually scheduled every 3 to 6 months for the first 3 to 5 years and once a year after that. They may be more often if you have an aggressive type of NET.

During follow-up visits

During a follow-up visit, your healthcare team will usually ask questions about the side effects of treatment and how you’re coping. They may also ask about any symptoms that you are having and if they are getting worse.

Your doctor may do a physical exam, including:

  • feeling for enlarged lymph nodes
  • feeling the abdomen to check for an enlarged liver
  • checking your blood pressure

Tests are often part of follow-up care. You may have:

  • CgA (chromogranin A) measured in your blood every 3 to 6 months to check for increased levels, which may mean the cancer has come back
  • a CT scan every 6 to 12 months to check for cancer in other parts of the body

Other tests that may be done during follow-up are:

  • biochemical markers to check specific hormone levels in the blood depending on the type of functional tumour you have
  • 5-HIAA measured in your urine every 3 to 6 months (when you have a serotonin-producing tumour) to check for heart problems called carcinoid heart disease
  • metanephrines measured in your urine if you have a pheochromocytoma or paraganglioma
  • an echocardiogram, usually every year, if the 5-HIAA level is high
  • octreotide scan, MIBG scan or both to check if the cancer has come back

If the cancer has come back, you and your healthcare team will discuss a plan for your treatment and care.

Questions to ask about follow-up

To make the decisions that are right for you, ask your healthcare team questions about follow-up.

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