What happens after treatment for Wilms tumor?

After treatment for Wilms tumor, the main concerns for most families are the short- and long-term effects of the tumor and its treatment, and concerns about progression or recurrence of the tumor.

It is certainly normal to want to put the tumor 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 long-term recovery.

Follow-up exams and tests

Your child's health care team will set up a follow-up schedule, which will include physical exams and imaging tests (such as ultrasounds and CT scans) to look for the growth or return of the tumor, or any problems related to treatment. Since most children have had a kidney removed, blood and urine tests will be done to check how well the remaining kidney is working. If your child received doxorubicin (Adriamycin) during chemotherapy, the doctor may also order imaging tests to check the function of your child's heart.

The recommended schedule for follow-up exams and tests depends on the initial stage and appearance (favorable or unfavorable) of the cancer, the type of treatment, and any problems that the child may have had during treatment. Doctor visits and tests will be more frequent at first (about every 6 to 12 weeks for the first couple of years), but the time between visits may be extended as time goes on.

During this time, it is important to report any new symptoms to your child's doctor right away, so that the cause can be found and treated, if needed. Your child' doctor can give you an idea of what to look for.

If the tumor recurs, or if it does not respond to treatment, your child's doctors will discuss with you the other treatment options available (see "How is Wilms tumor treated?").

Long-term effects of cancer treatment

Because of major advances in treatment, many children treated for Wilms tumor are now surviving into adulthood. Doctors have learned that the treatments may affect children's health later in life, so watching for health effects as they get older has become more of a concern in recent years.

Just as the treatment of childhood cancer requires a very specialized approach, so does the care and follow-up after treatment. The earlier any problems can be recognized, the more likely it is they can be treated effectively.

Young people treated for Wilms tumor are at risk, to some degree, for several possible late effects of their cancer treatment. The risk of late effects depends on a number of factors, such as the specific treatments the child received, the doses of treatment, and the age of the child when being treated. These late effects may include:

• Reduced kidney function
• Heart or lung problems after receiving certain chemotherapy drugs or radiation therapy to these parts of the body
• Slowed or decreased growth and development
• Changes in sexual development and ability to have children (especially in girls)
• Development of second cancers later in life (rare)

To help increase awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives, the Children's Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers. These guidelines can help you know what to watch for, what type of screening tests should be done to look for problems, and how late effects may be treated.

Ask your child's health care team about possible long-term complications and make sure there is a plan in place to watch for these problems and treat them, if needed. To learn more, ask your child's doctors about the COG survivor guidelines. You can also download them for free at the COG Web site: www.survivorshipguidelines.org. The guidelines are written for health care professionals. Patient versions of some of the guidelines available (as "Health Links") on the site as well, but we urge you to review them with a doctor.

For more about some of the possible long-term effects of cancer treatment, see the separate American Cancer Society document, Children Diagnosed With Cancer: Late Effects of Cancer Treatment.

Emotional and social issues for Wilms tumor survivors and their families

Most children with Wilms tumors are very young at the time of diagnosis. Still, some children may have emotional or psychological issues that need to be addressed during and after treatment. Depending on their age, they may also have some problems with normal functioning and school work. These can often be overcome with support and encouragement. Doctors and other members of the health care team can also often recommend special support programs and services to help children after cancer treatment.

Centers that treat many patients with Wilms tumors may have programs to introduce new patients and their families to others who have finished their treatment. Seeing another patient with Wilms tumor doing well is often helpful for the patient and family.

Keeping good medical records

As much as you may want to put the experience behind you once treatment is completed, it is also very important to keep good records of your child's medical care during this time. Eventually, your child will grow up and be on his or her own. It is important that you or your child is able to give other doctors the details of the cancer diagnosis and treatment. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. There is certain information that your child's doctors should have, even into adulthood, including:

• A copy of the pathology report(s) from any biopsies or surgeries.
• If there was surgery, a copy of the operative report(s).
• If your child stayed in the hospital, a copy of the discharge summaries doctors prepare when patients are sent home.
• If chemotherapy was given, a list of the final doses of each drug your child received. Certain drugs may have specific long-term side effects. If you can get a list of these from the pediatric oncologist, it might help any new doctors your child has.
• If radiation therapy was given, a summary of the type and dose of radiation and when and where it was given.