What Survivors Should Know (FAQs)

Who is a leukemia survivor?

A leukemia survivor is someone who has completed treatment for his or her leukemia and is considered to be in remission. You can be a survivor if you completed your treatment decades ago, or just a few years ago.

If I’m a survivor, why do I need to keep thinking about my leukemia?

Even if you’re in remission, the effects of your leukemia and your leukemia treatment can last for many years. For instance, a growing number of studies show that the treatments you received as part of your leukemia therapy can lead to health problems later in life. These “late effects” can occur in pediatric and adult leukemia survivors. The Long Term Follow-Up Study, a major national study of childhood cancer survivors, recently found that that the health problems of these survivors increased steadily over time, even 30 years after their treatment.

What’s a late effect?

A late effect is any effect—from infertility to poor study skills to denial of health insurance—that occurs as a result of your leukemia or leukemia treatment. They are called late effects because they affect your health after your cancer treatment is completed.

What are some of the most common late effects among leukemia survivors?

Leukemia survivors may experience chronic heart conditions, lung disease, liver disease, fertility issues, reduced bone density and muscle strength, subsequent cancers, brain and nerve dysfunction, and fatigue. Survivors may also experience learning disabilities, poor work performance, psychological distress and health insurance discrimination. You can learn more about these late effects, and their links to different types of leukemia and their treatments, at the Leukemia Late Effects Tracker

Does every survivor experience late effects?

Not all leukemia survivors will experience late effects. But a 2003 study of all cancer survivors found that two-thirds of patients who received chemotherapy or radiation had at least one physical, psychological or social late effect at least five years after their cancer was diagnosed. One-quarter of cancer survivors experience a late effect that is life-threatening. I’m an adult leukemia survivor.

Will my late effects be different from those in pediatric survivors?

Pediatric and adult leukemia survivors can share many of the same late effects, depending on their leukemia type and treatment. But there are some late effects—the “chemo brain” that makes it difficult to concentrate in class, for instance—that may be more important for children and young adults. Other late effects, such as infertility, could be more important to adult survivors.

What should I tell my “regular” doctors about my leukemia treatment?

Your primary care physician should know what kind of leukemia you had, when you were diagnosed and treated, what kind of treatment(s) you received, and if you are still under the care of a leukemia specialist. With this information, your primary care doctor can help you recognize any late effects and work with your other doctors to treat these late effects. If you were treated for pediatric or adult leukemia at The Johns Hopkins Kimmel Cancer Center, you will receive a two-page history at the end of your active treatment that lists your specific cancer, the medications or therapies you received, the dosage of those treatments, when those treatments were delivered., and who to contact at Johns Hopkins for further information.

For more tips on sharing your leukemia history, visit Talking With Your Doctors.

Where can I go for more information on leukemia survivorship issues?

You can browse this site for more specific information on late effects Leukemia Late Effects Tracker, survivor support groups at Johns Hopkins Support for Survivors, ongoing studies of leukemia survivors at Johns Hopkins and the latest research Survivor Research Update on leukemia survivorship.