Follow-up after treatment for acute myeloid leukemia

Follow-up care lets your healthcare team keep track of your health for a period of time after treatment ends. Follow-up for acute myeloid leukemia (AML) is an important part of cancer care and is often shared among the cancer specialists (oncologists or hematologists) 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 and symptoms that don't go away. Tell your healthcare team if you have:

• fatigue
• a general feeling of discomfort or illness (called malaise)
• loss of appetite
• weight loss
• bleeding or bruising
• frequent infections

The chance that AML will come back (recur) is greatest during treatment or shortly after treatment is finished. It is unusual for AML to recur if there are no signs of AML within a few years of finishing treatment.

Follow-up visits or tests for AML are usually scheduled:

• frequently, likely every 1 to 2 months, for 2 years after treatment is finished (even if there are no signs of disease)
• more frequently, likely once or twice a week, for the first 3 months after a stem cell transplant
• less frequently, likely every 3 to 6 months, for up to 5 years

During a follow-up visit, your healthcare team will usually ask questions about the side effects of treatment and how you’re coping.

Your doctor may do a physical exam, including:

• measuring vital signs for fever, shortness of breath and rapid heartbeat
• checking the skin for bruising and paleness
• feeling areas of the neck, underarm and groin for any swollen, or enlarged, lymph nodes
• looking in the mouth for infection, bleeding or swollen gums
• feeling the abdomen for enlarged organs
• checking the skeleton for tenderness or pain

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

• a complete blood count (CBC) to check for abnormal blood cell counts
• blood chemistry tests to show how well certain organs are working and find problems caused by the spread of the leukemia cells
• imaging tests, such as a chest x-ray, a CT scan, an MRI or an ultrasound, to get helpful information about the spleen, liver or lymph nodes
• a bone marrow aspiration and biopsy to follow up after the results of the blood tests or if new symptoms develop

If the cancer has come back, you and your healthcare team will discuss 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?