What Happens After Treatment for Wilms Tumors?

Follow-up exams and tests after Wilms tumor treatment

After your child finishes treatment for Wilms tumor, their cancer care team will talk to you about a follow-up schedule. This includes physical exams and imaging tests (like chest x-rays, ultrasounds, and CT scans).

These exams and tests will look for the growth or return of the tumor, or any problems related to treatment.

If your child had part or all of a kidney removed, blood and urine tests will be done to check how well the remaining kidney tissue is working. If they got the drug doxorubicin (Adriamycin) during chemotherapy for their Wilms tumor, the doctor may also order tests to check the function of your child’s heart.

How often will my child need follow-up visits?

Your child’s schedule for follow-up exams and tests will depend on several factors, including:

• The initial stage and histology (favorable or anaplastic) of their Wilms tumor
• If they have a genetic syndrome related to the tumor
• The types of treatment they received
• Any problems they had during treatment

Doctor visits and tests will be more frequent at first. You can expect to have an appointment every 6 to 12 weeks for the first couple of years. But you might have less frequent visits as time goes on.

When should we report new symptoms to the cancer care team?

It’s important to report any new symptoms to your child’s cancer care team right away, so the cause can be found and treated, if needed. The care team can give you an idea of what to watch for.

If your child’s tumor comes back, or if it doesn’t respond to treatment, the cancer care team will discuss treatment options with you.

Children with bilateral Wilms tumors (tumors in both kidneys) or Denys-Drash syndrome will also need regular tests to look for possible early signs of kidney failure. This includes urine tests, blood pressure checks, and blood tests of kidney function.

Asking the cancer care team for a survivorship care plan

Talk with your child’s treatment team about developing a survivorship care plan. This plan might include:

• A summary of your child’s diagnosis, the tests that were done, and the treatment that was given
• A suggested schedule for follow-up exams and tests
• A schedule for other tests that might be needed in the future, such as early detection (screening) tests for other types of cancer, or tests to look for long-term health effects from the cancer or its treatment
• A list of possible late- or long-term side effects from treatment, including what to watch for and when to contact the doctor

Keeping health insurance and copies of medical records

It’s very important to keep good records of your child’s medical care during this time. Gathering these details soon after treatment may be easier than trying to get them at some point in the future. This can be very helpful later on if your child changes doctors.

Learn more about this in Keeping Copies of Important Medical Records.

It’s also very important to keep health insurance coverage. Tests and doctor visits can cost a lot, and even though no one wants to think of the tumor coming back, this could happen.

Possible late and long-term effects of treatment for Wilms tumor

Young people treated for Wilms tumor are at risk, to some degree, for several possible late effects of their cancer treatment.

Because of major advances in treatment, most children with Wilms tumors are now surviving into adulthood. Doctors have learned that treatment can affect a child’s health later in life, so watching for health effects as they get older has become more of a concern in recent years.

It’s important to discuss these possible effects with your child’s cancer care team. Make sure you understand what to watch for and what to report to the care team. The earlier problems are found, the more likely they can be treated effectively.

Your child’s risk of late effects will depend on a number of factors. This includes which treatments they had, the doses they received, and their age during treatment.

Possible late effects could include:

Reduced kidney function or kidney failure

Because children treated for Wilms tumor usually only have 1 kidney, they have a slightly higher risk of kidney failure and will need to be monitored for the rest of their lives. They also need to keep well hydrated to promote good kidney health. Some medicines, such as codeine and ibuprofen, should only be taken in small amounts to avoid kidney damage.

Heart problems

Children who get the chemo drug doxorubicin have a higher risk of developing heart problems, even years after treatment has ended. This is especially true if they did not receive dexrazoxane to protect their heart.

Children who get doxorubicin and radiation therapy to the lungs have an even higher risk of heart problems. Echocardiograms may be done to check on the effects of doxorubicin on the heart.

Lung problems

Children whose cancer spread to their lungs and who got radiation therapy to the chest are at risk for lung problems after treatment. Pulmonary function tests can be done to see if there are any changes to the lungs.

Scoliosis and shorter height

Scoliosis, or curvature of the spine, and underdevelopment of nearby soft tissue may happen in children who get radiation therapy to the spine. The risk depends on the location and dose of the radiation therapy.

Second cancer

Wilms tumor survivors have a slightly higher risk of getting another type of cancer, called a second cancer, after treatment. The most important risk factors for a second cancer are whether treatment included radiation therapy and whether the chemo drug doxorubicin was used.

For example, young girls who get radiation therapy to treat a Wilms tumor that has spread to the lungs have an increased risk of breast cancer.

Pregnancy and fertility concerns

People who had radiation to the abdomen for a Wilms tumor should be considered "high risk" during pregnancy and closely watched by their doctors.

Young girls who got radiation to their abdomen for a Wilms tumor may have fertility problems when they get older. They may also have premature menopause. They need to be followed closely during puberty and may need to be referred to a fertility expert during this time.

Dental problems

A child treated for a Wilms tumor may have dental issues, depending on their age at treatment. This could include problems with teeth formation, enamel issues, or missing teeth. Regular dental care is very important.

Other complications

There may be other possible complications from treatment as well. Your child’s cancer care team should discuss any possible problems with you.

Long-term follow-up care

The Children’s Oncology Group (COG) has developed long-term follow-up guidelines for survivors of childhood cancers, such as Wilms tumors. These guidelines were created to help increase awareness of late effects and improve follow-up care of childhood cancer survivors throughout their lives.

The 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 can be treated

It’s very important to discuss possible long-term complications with your child’s health care team. Make sure there’s a plan in place to watch for these problems and treat them, if needed.

To learn more, ask your child’s cancer care team about the COG survivor guidelines. You can also read them online at www.survivorshipguidelines.org. The guidelines themselves are written for health care professionals. Patient versions of some of the guidelines are available (as “Health Links”) on the site as well.

For more about some of the possible long-term effects of treatment, see Late Effects of Childhood Cancer Treatment.

Helping your child with the emotional and social effects of Wilms tumor treatment

Most children with Wilms tumors are very young when they are diagnosed. Still, some children may have emotional or psychological issues that need to be addressed during and after treatment. Depending on their age, children may also have some problems with normal functioning and schoolwork.

These types of issues can often be helped with support and encouragement. Your child’s health care team might also recommend special support programs and services for children after cancer treatment. To learn more, see When Your Child's Treatment Ends.

Parents, family members, and other caregivers can also be affected, both emotionally and in other ways.

Some common family concerns during cancer treatment include financial stresses, traveling to and staying near the cancer center/hospital, the possible loss of a job, and the need for home schooling. Social workers and other professionals at treatment centers can often help families with these issues.

Centers that treat many children with Wilms tumors may have programs to introduce new patients and their families to others who have finished their treatment. This can give you an idea of what to expect during and after treatment, which is very important.

Support groups for families of children with cancer can also be helpful. If you need help finding such a group, call the American Cancer Society at 1-800-227-2345. We can put you in touch with a group or resource that may work for you.

You can also learn more in When Your Child Has Cancer.