After treatment for Wilms tumors, the main concerns for most families are the short- and long-term effects of the cancer and its treatment and concerns about whether the cancer might come back.
It is normal to want to put the cancer and its treatment behind you, and to get back to a life that doesn't revolve around cancer. But it's important to keep in mind that follow-up care is a key part of giving your child the best chance for long-term recovery.
Follow-up exams and tests
Follow-up tests will include physical exams and tests like ultrasound 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 see how well the remaining kidney is working. If your child had doxorubicin during chemotherapy, the doctor may also order tests to check your child's heart.
The schedule for follow-up exams and tests depends on the stage of the cancer when it was found and its histology, or how it looked (favorable or unfavorable), as well as any problems the child may have had during treatment. Doctor visits will be more frequent at first (about every 6 to 12 weeks for the first couple of years), but the time between visits may get longer as time goes on.
During this time, it is important that any new symptoms be reported to your child's doctor right away, so that they can be found and treated, if needed. Your child's doctor can give you an idea of what to look for. If the tumor comes back, or if it does not respond to treatment, the doctors will talk to you about other treatment options.
Long-term effects of cancer treatment
Treatment for Wilms tumor has improved over the years, and more children are now living to become adults. While this is good news, it also has shown that childhood cancer treatment can affect the child's health as an adult. The results are known as late effects.
Careful follow-up after treatment allows doctors to watch for any late effects that show up. The risk for different late effects depends on a number of things such as what treatment the child had and the age at which the child was treated. Some of these late effects could include reduced kidney function, heart or lung problems, slow or decreased growth, changes in sexual development, and (rarely) getting a second cancer.
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. You can download them for free at the COG Web site: www.survivorshipguidelines.org. The guidelines are written for doctors and nurses. 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.
Ask your child's health care team about possible late effects and make sure there is a plan in place to watch for these problems and treat them, if needed. To learn more about these and other late effects, please see our 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 were very young when their cancer was found. Still, some children may have emotional issues that need to be addressed during and after treatment. They might also have some problems with normal functioning and school work. There are often ways to help with these. Doctors and other members of the health care team can also often recommend special support programs and services to help children after cancer treatment. And centers that treat many patients with Wilms tumors may have programs to help new patients and their families meet others who have finished their treatment. Seeing other patients with Wilms tumor doing well is often helpful for the patient and family.
Keeping good medical records
As your child grows up, it is important that other doctors have the details of the cancer diagnosis and treatment. There are certain things that your child’s doctors should have. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. Make sure you have this information handy and always keep copies for yourself:
- A copy of the pathology report from any biopsies or surgeries
- A copy of the operative report if the child had surgery
- If the child stayed in the hospital, a copy of the discharge summary that the doctor prepared when the child was sent home.
- A list of the final doses of any chemo drugs the child was given. Certain drugs may have known 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 the child had radiation, a final summary of the dose and field
Last Revised: 08/01/2012