Follow-up after treatment for neuroendocrine cancer

Follow-up care lets your healthcare team keep track of your health for a period of time after treatment ends. This important part of cancer care is often shared among the cancer specialists and your family doctor. They will help you recover from treatment side effects and monitor you for any signs that the cancer has come back (recurred).

Follow-up care may not seem that important to you, especially if your treatment was long or very hard. You may find the idea of follow-up care stressful because it reminds you of your cancer experience or because you are worried about what a test might reveal. Talk to your healthcare team about how you feel and about why follow-up matters. Your healthcare team is there to help.

Don’t wait until your next scheduled appointment to report any new symptoms or 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 you will need close follow-up during this time. The risk of recurrence depends on several factors, including whether you had surgery, the size of the tumour, if there was cancer in the lymph nodes, and how fast the cells are growing and dividing.

Follow-up visits for neuroendocrine cancer 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 a more aggressive tumour.

You may need follow-up visits beyond 5 years, depending on the type of tumour and risk of recurrence. Talk to your healthcare team to decide on a follow-up schedule that is best for you.

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 have 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 you may have during follow-up are:

• biochemical markers to check specific hormone levels in the blood
• 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.

The following are questions that you can ask the healthcare team about follow-up after treatment for cancer. Choose the questions that fit your situation and add questions of your own. You may find it helpful to take the list to the next appointment and to write down the answers.

• What is the schedule for follow-up visits?
• How often is follow-up scheduled with the cancer specialist?
• Who is responsible for follow-up visits?
• What will happen at a follow-up visit?
• What tests are done on a regular basis? How often are they done?
• Are there any symptoms that should be reported right away? Who do I call?
• Who can help me cope with long-term side effects of treatment?