During and after treatment for childhood leukemia, the main concerns for most families are the short- and long-term effects of the leukemia and its treatment, and concerns about the leukemia coming back.
It’s certainly normal to want to put the leukemia and its treatment behind you and to get back to a life that doesn’t revolve around cancer. But it’s important to realize that follow-up care is a central part of this process that offers your child the best chance for recovery and long-term survival.
For several years after treatment, regular follow-up exams will be very important. The doctors will watch for possible signs of leukemia, as well as for short-term and long-term side effects of treatment.
Checkups typically include careful physical exams, lab tests, and sometimes, imaging tests. These checkups will usually be 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 come back, it is most often while the child is still being treated or within a year or so after finishing treatment. It is unusual for an acute leukemia (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 a chance to discuss questions and concerns that come up during and after your child’s recovery. For example, almost any cancer treatment can have side effects. Some go away soon after treatment, but others can last a long time, or might not even show up until years later. It’s important to report any new symptoms to the doctor right away, so that the cause can be found and treated, if needed.
Keeping good medical records
As much as you might want to put the experience behind you once treatment is done, it’s very important to keep good records of your child’s medical care during this time. This can be very helpful later on as your child changes doctors. Gathering the details during or soon after treatment may be easier than trying to get them at some point in the future. Be sure the doctors have the following information (and always keep copies for yourself):
- A copy of the pathology reports from any biopsies or surgeries.
- If your child had surgery, a copy of the operative report.
- If your child stayed in the hospital, copies of the discharge summaries that the doctor wrote when your child was sent home.
- A list of the final doses of each chemotherapy drug or other drug your child received. (Certain drugs have specific long-term side effects.)
- If radiation therapy was given, a summary of the type and dose of radiation and when and where it was given.
- The names and contact information of the doctors who treated your child’s leukemia.
It’s also very important to keep health insurance coverage. Tests and doctor visits cost a lot, and even though no one wants to think of the leukemia coming back, this could happen.
Reprinted with permission. © 2018 American Cancer Society. All Rights Reserved. Retrieved from http://www.cancer.org/cancer/leukemiainchildren/detailedguide/childhood-leukemia-after-follow-up on June 5, 2018.