Follow-up after treatment for chronic lymphocytic leukemia
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 (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.
Schedule for follow-up visits
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)
- loss of appetite
- weight loss
- frequent infections
- enlarged lymph nodes in the neck, underarm, groin or above the collarbone
- pain or a feeling of fullness in the abdomen
Chronic lymphocytic leukemia (CLL) often comes back, so you may have treatment
on and off for many years. If you are in remission, you may have follow-up tests
every 3 to 6 months to monitor your health and to check for signs that the
cancer has come back. If you are
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.
Your doctor may do a physical exam, including:
- feeling areas of the neck, underarms and groin for any swollen or enlarged lymph nodes
- feeling the abdomen for enlarged organs, like the liver or spleen
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 check how well certain organs are working and find problems caused by the spread of leukemia cells, or blasts
- imaging tests, such as chest x-ray, CT scan or ultrasound, to get helpful information about the spleen, liver or lymph nodes
- a bone marrow aspiration and biopsy if new symptoms develop or to follow up after the results of blood tests
If the cancer has come back, you and your healthcare team will discuss your treatment and care.
Find out more about follow-up
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?
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