Follow-up after treatment for acute lymphoblastic leukemia

Follow-up care for acute lymphoblastic leukemia (ALL) 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 (relapsed or 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:

• fatigue
• a general feeling of discomfort or illness (called malaise)
• feeling weak, dizzy or lightheaded
• shortness of breath
• pale skin
• loss of appetite
• weight loss
• bleeding or bruising
• frequent infections

The chance that ALL will come back is greatest within 5 years after finishing treatment, so you will need close follow-up during this time. If a relapse occurs, it is usually during treatment or shortly after treatment is completed. It is unusual for ALL to return if there are no signs of the disease 5 years after treatment.

Follow-up visits for ALL are usually scheduled at these times:

• You'll have a follow-up visit every few months for 5 years after treatment is finished (even if there are no signs of disease). In the first year of follow up, you will likely go to the doctor every 1 to 2 months.
• After a stem cell transplant, you'll have follow-up visits frequently (likely once or twice a week) for the first 3 months.
• You'll have follow-up visits less frequently as time goes on (the time between exams will become longer but they will continue indefinitely). During the third year (and beyond) of follow-up, you will receive physical exams and blood tests every 6 to 12 months or according to your doctor's recommendation.

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 will do a complete physical exam, which will include:

• 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 signs of infection and bleeding or swollen gums
• feeling the abdomen for enlarged organs (spleen and liver)
• checking the skeleton for tenderness or pain
• checking your temperature, blood pressure, heart and breathing rate, and weight
• doing a testicular exam

Tests are part of follow-up care for ALL. You will have standard laboratory tests and sometimes more sensitive tests that can detect leukemia cells that standard tests can miss. You may have some of the following tests during follow-up care for ALL:

• A complete blood count (CBC) plus differential indicates if you have abnormal blood cell counts by measuring the number of each type of white blood cells. This is also called a white cell differential.
• Blood chemistry tests show how well certain organs are working and find problems caused by the spread of leukemia cells (blasts).
• Imaging tests, such as chest x-rays, CT scans, PET scans, MRIs and ultrasounds, get helpful information about the spleen, liver and lymph nodes.
• A bone marrow aspiration and biopsy are used to follow up after the results of blood tests or if new symptoms develop.
• Flow cytometry may also include cytogenetics, fluorescence in situ hybridization (FISH), molecular testing and testing for minimal residual disease (MRD). MRD testing can include sensitive tests such as polymerase chain reaction (PCR) and next-generation sequencing (NGS). These tests can all help find and analyze leukemia cells that standard tests can't find.

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?