ON THIS PAGE: You will read about your medical care after treatment for leukemia is completed, and why this follow-up care is important. Use the menu to see other pages.
Care for people diagnosed with leukemia doesn’t end when active treatment has finished. Your health care team will continue to check to make sure the disease has not returned, manage any side effects, and monitor your overall health. This is called follow-up care.
Your follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your recovery in the months and years ahead. For HCL and PLL, this may include blood tests, bone marrow biopsies, and possibly imaging tests.
Learn more about the importance of follow-up care.
Watching for recurrence
One goal of follow-up care is to check for a recurrence. Leukemia recurs because small areas of leukemia cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. During follow-up care, a doctor familiar with your medical history can give you personalized information about your risk of recurrence. Your doctor will ask specific questions about your health. Some people may have blood tests or imaging tests done as part of regular follow-up care, but testing recommendations depend on several factors including the type and stage of cancer originally diagnosed and the types of treatment given.
The anticipation before having a follow-up test or waiting for test results can add stress to you or a family member. This is sometimes called “scan-xiety.” Learn more about how to cope with this type of stress.
Managing long-term and late side effects
Most people expect to experience side effects when receiving treatment. However, it is often surprising to survivors that some side effects may linger beyond the treatment period. These are called long-term side effects. Other side effects called late effects may develop months or even years afterwards. Long-term and late effects can include both physical and emotional changes.
Talk with your doctor about your risk of developing such side effects based on the type of leukemia, your individual treatment plan, and your overall health. If you had a treatment known to cause specific late effects, you may have certain physical examinations, scans, or blood tests to help find and manage them.
Several long-term side effects or late effects from treatments for HCL and PLL may occur:
Lung damage from certain drugs or radiation therapy to the lungs
A weakened heart muscle from higher doses of doxorubicin (Adriamycin) or radiation therapy to the chest
Infertility (inability to have a child) or premature menopause from high-dose cyclophosphamide (Neosar) or other chemotherapy
A secondary leukemia or other type of cancer are those that develop because of the treatment for the first type of cancer. They are more common after treatment with chemotherapy. Specifically, people treated for CLL are at a higher risk for developing skin cancer and should protect their skin from the sun. They also have a higher risk of lung cancer, and smoking is strongly discouraged.
Keeping personal health records
You and your doctor should work together to develop a personalized follow-up care plan. Be sure to discuss any concerns you have about your future physical or emotional health. ASCO offers forms to help create a treatment summary to keep track of the treatment you received and develop a survivorship care plan when treatment is completed.
This is also a good time to decide who will lead your follow-up care. Some survivors continue to see their oncologist or hematologist, while others transition back to the care of their family doctor or another health care professional. This decision depends on several factors, including the type and stage of cancer, side effects, health insurance rules, and your personal preferences.
If a doctor who was not directly involved in your care will lead your follow-up care, be sure to share your cancer treatment summary and survivorship care plan forms with him or her and with all future health care providers. Details about your cancer treatment are very valuable to the health care professionals who will care for you throughout your lifetime.
The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a leukemia diagnosis. You may use the menu to choose a different section to read in the guide.