For several years after treatment, regular follow-up exams will be very important. The doctors continue to watch for signs of disease, as well as for short-term and long-term side effects of treatment.

Checkups involve careful physical exams, lab tests, and sometimes, imaging tests. These checkups will usually occur monthly during the first year, and then less often for at least 5 years after therapy. After that time, most children see their doctor at least yearly for a checkup.

If leukemia does recur, it is most often while the child is being treated or within a year or so after finishing treatment. It is unusual for high-risk ALL or AML to return if there are no signs of the disease within the next 2 years.

A benefit of follow-up care is that it gives you an opportunity to discuss questions and concerns that arise during and after your child's recovery. It is important to report any new symptoms to the doctor right away, so that the cause can be determined and treated, if needed.

Long-term effects of cancer treatment

Because of major advances in treatment, more children treated for cancer are living into adulthood. With childhood cancer survivors living longer, their health as adults has come more into focus in recent years.

Just as the treatment of childhood cancer requires a very specialized approach, so does follow-up and monitoring for late effects of treatment. Careful follow-up after cancer treatment is very important.

Childhood cancer survivors are at risk, to some degree, for several possible late effects of their cancer treatment. This risk depends on a number of factors, such as the type of cancer, the type of treatments they received, dosages of cancer treatment, and age at the time of treatment.

One of the most serious side effects of ALL therapy is the possibility of getting acute myelogenous leukemia (AML) at a later time. This occurs in about 5% of patients after they have received chemotherapy drugs called epipodophyllotoxins (etoposide, teniposide) or alkylating agents (cyclophosphamide, chlorambucil). Less often, children cured of leukemia may later develop non-Hodgkin lymphomas or other cancers. Of course, the risk of getting these second cancers must be balanced against the obvious benefit of treating a life-threatening disease such as leukemia with chemotherapy.

Children whose treatment for leukemia has included radiation therapy of the brain may have some decrease in their learning ability. Generally, this is mild and does not cause significant disability. Still, doctors try to limit radiation to the brain whenever possible.

Survivors of childhood leukemia often suffer from emotional or psychological problems. They also may have some problems with normal functioning and work. These can often be overcome with support and encouragement.

Cancer treatments may reduce the growth of children, and they may end up a bit shorter as adults. This is especially true after stem cell transplants. This can be helped by the treating survivors with growth hormone, if needed. Cancer treatment may also affect sexual development and ability to have children in some cases.

Osteoporosis (thinning of the bones) with a chance of bone fracture may result from the use of prednisone, dexamethasone, or other steroid drugs.

Late effects may also include heart or lung problems after receiving certain chemotherapy drugs or radiation therapy to these parts of the body.

There may be other possible complications from chemotherapy as well. Your child's doctor should carefully review any possible problems with you before starting treatment. Specialized centers are often the best place to be treated when such effects arise.

For more information on these and other possible late effects, please see the American Cancer Society document, Childhood Cancer: Late Effects of Cancer Treatment.

Moving on

After treatment is complete, you and your child may want to put the experience behind you as much as possible. Eventually, your child will grow up, be on his or her own, and have new doctors. But it is important that you or your child be able to give the new doctors the exact details of the cancer diagnosis and treatment. Gathering the details soon after treatment may be easier than trying to get them at some point in the future. There are certain pieces of information that your child's doctors should have, even into adulthood. These include:

• A copy of the pathology report from any biopsies or surgeries.

• If your child had surgery, a copy of the operative report.

• If your child was hospitalized, a copy of the discharge summaries (forms that doctors must prepare when patients leave the hospital).

• A list of the final doses of each chemotherapy drug or other drug your child received. (Certain chemotherapy drugs have specific long-term side effects. If you can get a list of these from the pediatric oncologist, this might also help any new primary care doctor.)

• If your child had radiation, a final summary of the dose and field.

Last Medical Review: 08/19/2007
Last Revised: 05/14/2009