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Wilms Tumor - Childhood - Introduction

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will find some basic information about this disease and the parts of the body it may affect. This is the first page of Cancer.Net’s Guide to Wilms Tumor - Childhood. Use the menu to see other pages. Think of that menu as a roadmap for this entire guide.

About the kidneys

Every person has 2 kidneys, which are located above the waist on both sides of the spine. These reddish-brown, bean-shaped organs are closer to the back of the body than to the front. The kidneys filter blood to remove impurities, excess minerals and salts, and extra water. They also produce hormones that help control blood pressure, red blood cell production, and other bodily functions.

As the kidneys develop in an unborn baby, some of the early cells will become glomeruli, which are balls of blood vessels that filter water, salt, and waste out of the blood. Others will become nephrons, which are the tubes through which the water, salt, and waste pass.

About Wilms tumor

If the early cells of the kidney do not develop into glomeruli or nephrons, clusters of the immature cells may form in the kidneys when the baby is born. Usually, these cells mature by the time a child is 3 or 4 years old, but some may grow out of control, forming a mass of immature cells. This mass is called a Wilms tumor. It can also be called a nephroblastoma.

A Wilms tumor is always cancerous. It is the most common type of kidney cancer diagnosed in children. A cancerous tumor is malignant, meaning it can grow and spread to other parts of the body. However, a Wilms tumor is very different from adult kidney cancer.

A Wilms tumor usually occurs in only 1 kidney, called unilateral. However, it can also develop in both kidneys, called bilateral. Rarely, a Wilms tumor develops in 1 kidney first and then the other.

A Wilms tumor is often found only after it has grown to a size of about 8 ounces, which is about 4 times the weight of a healthy 3-year-old child’s kidney. About 1 out of 4 children with a Wilms tumor have evidence that the tumor has spread either to the lung or liver when it is first diagnosed.

Every person has 2 kidneys, which are located above the waist on both sides of the spine. These reddish-brown, bean-shaped organs are each about the size of a small fist. They are located closer to the back of the body than to the front. The renal artery brings blood to the kidney and branches into the multi-sectioned medulla. Surrounding the medulla is the cortex. The renal pelvis is the broad opening at the top of the ureter. The renal pelvis connects the center of the kidney to the ureter, which connects to the bladder. Copyright 2005 American Society of Clinical Oncology. Robert Morreale/Visual Explanations, LLC.

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The next section in this guide is Statistics. It helps explain the number of children who are diagnosed with a Wilms tumor and general survival rates. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Statistics

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will find information about the estimated number of children who will be diagnosed with a Wilms tumor each year. You will also read general information on surviving the disease. Remember, survival rates depend on several factors, and no 2 people with a tumor are the same. Use the menu to see other pages.

Every person is different, with different factors influencing their risk of being diagnosed with this tumor and the chance of recovery after a diagnosis. It is important to talk with your doctor about any questions you have around the general statistics provided below and what they may mean for your child individually. The original sources for these statistics are provided at the bottom of this page.

How many children are diagnosed with a Wilms tumor?

In the United States, about 500 to 600 children are diagnosed with a Wilms tumor each year. The disease accounts for about 4% of all cancers in children younger than 15 and is the most common kind of kidney cancer in children.

A Wilms tumor occurs most often in young children, usually between the ages of 3 and 4. In fact, two-thirds of Wilms tumors are diagnosed before age 5, and nearly all cases are diagnosed before age 10. As children get older, these tumors are less common, but they can still occur in people of any age. Wilms tumors are slightly more common in girls than in boys, and the risk is slightly higher in Black children than White children. Asian American children have the lowest risk.

What is the survival rate for children with a Wilms tumor?

There are different types of statistics that can help doctors evaluate a person’s chance of recovery from a Wilms tumor. These are called survival statistics. A specific type of survival statistic is called the relative survival rate. It is often used to predict how having a tumor may affect life expectancy. Relative survival rate looks at how likely people with a Wilms tumor are to survive for a certain amount of time after their initial diagnosis or start of treatment compared to the expected survival of similar people without this tumor.

Example: Here is an example to help explain what a relative survival rate means. Please note this is only an example and not specific to this type of cancer. Let’s assume that the 5-year relative survival rate for a specific type of cancer is 90%. “Percent” means how many out of 100. Imagine there are 1,000 people without cancer, and based on their age and other characteristics, you expect 900 of the 1,000 to be alive in 5 years. Also imagine there are another 1,000 people similar in age and other characteristics as the first 1,000, but they all have the specific type of cancer that has a 5-year survival rate of 90%. This means it is expected that 810 of the people with the specific cancer (90% of 900) will be alive in 5 years.

It is important to remember that statistics on the survival rates for children with a Wilms tumor are only an estimate. They cannot tell an individual person if the tumor will or will not shorten their life. Instead, these statistics describe trends in groups of people previously diagnosed with the same disease, including specific stages of the disease.

The 5-year relative survival rate for children with a Wilms tumor is 93%.

The survival rates for children with a Wilms tumor vary based on several factors. These include the stage of tumor, a person’s age and general health, and how well the treatment plan works. The risk that a Wilms tumor will come back after treatment is between 15% and 50%, and it is most likely to come back within the first 2 years following treatment.

Stage I, II, and III tumors with a favorable histology have a 4-year relative survival rate that ranges from 95% to 100%. The histology of a tumor is how its cells look under a microscope. Stage IV and V tumors with a favorable histology have a 4-year relative survival rate that ranges from 85% to 100%. Survival rates for tumors with a focal anaplastic histology are generally lower in each category and range from 70% to 100% survival rates. For tumors with a diffuse anaplastic histology, the survival rates range from 30% to 85% in different stage categories.

Survival rates for children with a Wilms tumor are based on a small number of patients due to Wilms tumors being generally uncommon. Experts measure relative survival rate statistics for children with a Wilms tumor every 4 or 5 years. This means the estimate may not reflect the results of advancements in how children with a Wilms tumor are diagnosed or treated from the last 4 or 5 years. Talk with your child’s doctor if you have any questions about this information. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society and National Institutes of Health MedlinePlus websites. Additional source was: Seigel R, et al.: Cancer Statistics 2023. CA: A Cancer Journal for Clinicians. 2023 Jan; 73(1):17–48. doi/full/10.3322/caac.21763. (All sources accessed March 2023.)

The next section in this guide is Medical Illustrations. It offers a drawing of a kidney, which is where a Wilms tumor occurs. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Medical Illustrations

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will find a drawing of a kidney, which is where a Wilms tumor occurs. Use the menu to see other pages.

Every person has 2 kidneys, which are located above the waist on both sides of the spine. These reddish-brown, bean-shaped organs are each about the size of a small fist. They are located closer to the back of the body than to the front. The renal artery brings blood to the kidney and branches into the multi-sectioned medulla. Surrounding the medulla is the cortex. The renal pelvis is the broad opening at the top of the ureter. The renal pelvis connects the center of the kidney to the ureter, which connects to the bladder. Copyright 2005 American Society of Clinical Oncology. Robert Morreale/Visual Explanations, LLC.

The next section in this guide is Risk Factors. It describes the factors that may increase the chance of developing a Wilms tumor. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Risk Factors

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will find out more about the factors that increase the chance of developing a Wilms tumor. Use the menu to see other pages.

What are the risk factors for a Wilms tumor?

A risk factor is anything that increases a person’s chance of developing a tumor. Although risk factors often influence the development of a Wilms tumor, most do not directly cause it. Some children with several risk factors never develop a tumor, while others with no known risk factors do.

Most often, the risk of a Wilms tumor is not inherited, but there can be genetic reasons for the tumor’s development.

  • Genetic changes. Children may have a mutated (changed), damaged, or missing gene. This change can also cause other birth defects. About 15% of children with a Wilms tumor were born with other health problems.

  • WAGR syndrome.WAGR syndrome is a condition that causes a number of birth defects. Children with this syndrome have a 33% chance of developing a Wilms tumor. WAGR stands for:

    • Wilms tumor

    • Aniridia (no iris in the eye)

    • Genitourinary abnormalities, which are changes to the reproductive and urinary organs, or gonadoblastoma, which is a rare tumor of the reproductive organs

    • Intellectual disability

  • Beckwith-Wiedemann syndrome. This condition causes enlarged internal organs and limbs. Children with this syndrome have a higher risk of developing a Wilms tumor, kidney cysts, and tumors of the liver (hepatoblastoma), pancreas, and adrenal glands.

  • Denys-Drash syndrome. This is a rare condition in which male genital organs do not develop correctly and there is an increased risk of developing a Wilms tumor.

  • Family history. A small number of children with a Wilms tumor have a relative in their family with the disease.

The next section in this guide is Symptoms and Signs. It explains what changes or medical problems a Wilms tumor can cause. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Symptoms and Signs

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will find out more about the changes and medical problems that can be a sign of a Wilms tumor. Use the menu to see other pages.

What are the symptoms and signs of a Wilms tumor?

Children with a Wilms tumor may experience one or more of the following symptoms or signs. Symptoms are changes that you can feel in your body. Signs are changes in something measured, like taking your blood pressure or doing a lab test. Together, symptoms and signs can help describe a medical problem. Sometimes, children with a Wilms tumor do not have any of the symptoms and signs described below. Or, the cause of a symptom or sign may be a medical condition that is not cancer.

Usually, a Wilms tumor is found before it spreads to other parts of the body. A parent or relative may notice a large lump or feel a hard mass in the child’s belly or notice that the belly is much larger than usual. In some cases, a rapid change to a larger diaper size alerts parents to the presence of a tumor. A few children have abdominal pain. However, most of the time, the tumor grows without causing pain, and the child feels and appears healthy.

Frequently, children with a Wilms tumor may have the following symptoms:

  • Blood in the urine

  • High blood pressure

  • Anemia, which is a low level of red blood cells

  • Fatigue

  • A fever that does not go away

If you are concerned about any changes your child experiences, please talk with your child’s doctor. Your doctor will try to understand what is causing your child’s symptom(s). They may do an exam and order tests to understand the cause of the problem, which is called a diagnosis.

If a Wilms tumor is diagnosed, relieving symptoms remains an important part of your child’s cancer care and treatment. Managing symptoms may also be called "palliative and supportive care," which is not the same as hospice care given at the end of life. This type of care focuses on managing symptoms and supporting people who face serious illnesses, such as cancer. You can receive palliative and supportive care at any time during cancer treatment. Learn more in this guide’s section on Coping with Treatment.

Be sure to talk with your child’s health care team about the symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section in this guide is Diagnosis. It explains what tests may be needed to learn more about the cause of the symptoms. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Diagnosis

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will find a list of common tests, procedures, and scans that doctors use to find the cause of a medical problem. Use the menu to see other pages.

Doctors use many tests to find, or diagnose, a Wilms tumor. They also do tests to learn if the cancer has spread to another part of the body from where it started. If the cancer has spread, it is called metastasis. Doctors may also do tests to learn which treatments could work best.

For most types of tumors, a biopsy is the only sure way for the doctor to know if cancer is present. In a biopsy, the doctor takes a small sample of tissue for testing in a laboratory. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis.

How a Wilms tumor is diagnosed

There are different tests used for diagnosing a Wilms tumor. Not all tests described here will be used for every child. Your child’s doctor may consider these factors when choosing a diagnostic test:

  • The type of cancer suspected

  • Your child's signs and symptoms

  • Your child's age and general health

  • The results of earlier medical tests

In addition to a physical examination, the following tests may be used to diagnose a Wilms tumor.

Imaging tests

Imaging tests show pictures of the inside of the body. They can show if cancer has spread.

  • X-ray. An x-ray creates a picture of the structures inside of the body using a small amount of radiation.

  • Ultrasound. An ultrasound creates a picture of the internal organs using sound waves. A transmitter that emits sound waves is moved over the body. A tumor creates different echoes of the sound waves than healthy tissue, so when the waves are bounced back to a computer and changed into images, the doctor can find a tumor inside the body. The procedure is painless. An ultrasound is often done before a more definitive scan is done, such as a computed tomography (CT) scan or magnetic resonance imaging (MRI) scan (see below). An ultrasound is not necessary after a more definitive scan has been done to make the diagnosis.

  • Computed tomography (CT or CAT) scan. A CT scan takes pictures of the inside of the body using x-rays taken from different angles. A computer combines these pictures into a detailed, 3-dimensional image that shows any abnormalities or tumors. A CT scan can be used to measure the tumor’s size. Sometimes, a special dye called a contrast medium is given before the scan to provide better detail on the image. This dye can be injected into a person's vein or given as a pill or liquid to swallow.

    The first CT scan of the abdomen and pelvis will help show if the Wilms tumor has spread from the kidney into the blood vessels, particularly the inferior vena cava. The inferior vena cava is the major vein that carries blood from the legs, pelvis, and abdomen to the heart. If this is the case, the doctor will often recommend chemotherapy before surgery (see Types of Treatment). A chest CT scan may be used to find out if the tumor has spread to the lungs.

  • Magnetic resonance imaging (MRI). An MRI produces detailed images of the inside of the body using magnetic fields, not x-rays. MRI can be used to measure the tumor’s size. A special dye called a contrast medium is given before the scan to create a clearer picture. This dye can be injected into a person's vein or given as a pill or liquid to swallow.

  • Bone x-ray and bone scan. Bone x-rays and bone scans look for cancer in the bones of children who have a rare kidney tumor called clear cell sarcoma. A bone scan looks at the inside of the bones using a radioactive tracer. The amount of radiation in the tracer is too low to be harmful. The tracer is injected into a person's vein. It collects in areas of the bone and is detected by a special camera. Healthy bone appears lighter to the camera, and areas of injury, such as those caused by cancer, appear dark and stand out on the image.

Other tests to diagnose Wilms tumor

  • Blood/urine tests. Doctors will take samples of your child’s blood and urine. The results of these tests will help the doctor learn more about the tumor and your child’s general health.

  • Surgery or biopsy. For children with a mass in the kidney that appears to be a stage I or II Wilms tumor, a surgeon usually performs an abdominal operation called a laparotomy. This surgery removes the affected kidney and tumor. If the tumor is too large to be removed, or if it has an abnormal appearance on CT or MRI scans, the surgeon will only perform a biopsy. A biopsy is the only way to make a definite diagnosis, even if other tests can suggest that cancer is present. During a biopsy, a small amount of tissue is removed for examination under a microscope. A pathologist analyzes the sample(s) to determine whether tumor cells are present. If they are, the pathologist will also identify the cell type, which will help the doctor recommend an initial treatment. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

    People who have what looks like bilateral Wilms tumors (see Introduction) based on scans will usually not have a biopsy at the time of diagnosis. Instead, they usually start chemotherapy and then have surgery within 12 weeks after diagnosis. 

  • Chromosome tests. The pathologist may test the tumor tissue removed during the biopsy for changes in chromosomes 1 and 16. A tumor with changes in chromosome 1 is linked to worse outcomes after treatment. And, a tumor with changes in both of these chromosomes does not respond as well to standard treatment. Current research studies use more chemotherapy to treat children with a Wilms tumor that has these changes (see Types of Treatment).

After diagnostic tests are done, your child’s doctor will review the results with you. If the diagnosis is a Wilms tumor, these results also help the doctor describe the tumor. This is called staging.

The next section in this guide is Stages. It explains the system doctors use to describe the extent of the disease. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Stages

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will learn about how doctors describe a tumor’s growth or spread. This is called the stage. Use the menu to see other pages.

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What is cancer staging?

Staging is a way of describing where the tumor is located, if or where it has spread, and whether it is affecting other parts of the body.

Doctors use diagnostic tests to find out the tumor's stage, so staging may not be complete until all of the tests are finished. Knowing the stage helps the doctor recommend the best kind of treatment and can help predict a child's prognosis, which is the chance of recovery. There are different stage descriptions for different types of tumors.

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Stage groups for a Wilms tumor

A Wilms tumor is staged based on the results of surgery, analysis of the tumor cells (see Diagnosis), and whether the cancer has spread. There are 5 stages: stages I through V (1 through 5.) The stage provides a common way of describing the tumor, so doctors can work together to plan the best treatments.

Stage I: The tumor is found in 1 kidney and can be completely removed with surgery.

Stage II: Cancer is found in the kidney and in the fat, soft tissue or blood vessels near the kidney. It may have spread to the renal sinus. The renal sinus is the part of the kidney where blood and fluid enter and exit the organ. The tumor can be completely removed with surgery.

Stage III: Cancer is found in areas near the kidney and cannot be completely removed with surgery. The tumor may have spread to nearby organs and blood vessels or throughout the abdomen and to nearby lymph nodes. Lymph nodes are small, bean-shaped organs that help fight infection. Stage III cancer has not spread outside the abdomen.

Stage IV: Cancer has spread to other, more distant organs, such as the lungs, liver, bones, and brain, or to lymph nodes outside the abdomen. This is called metastasis.

Stage V: Cancer cells are in both kidneys at the same time. The tumor in each kidney is staged separately.

Refractory: A refractory Wilms tumor is a tumor that does not shrink during or after treatment.

Recurrent: A recurrent Wilms tumor is a tumor that has come back after treatment. The tumor may come back in the area where it first started or in another part of the body. If the tumor does return, there will be another round of tests to learn about the extent of the recurrence. These tests and scans are often similar to those done at the time of the original diagnosis.

Source: National Wilms Tumor Study Group Staging System.

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Prognostic factors

The 2 most important factors that predict the prognosis of a child with a Wilms tumor are:

  • The histology of the tumor. This is what the tumor cells look like under a microscope. A favorable histology is usually linked to a better prognosis. Tumors with an anaplastic histology are less likely to be successfully treated with chemotherapy and/or radiation therapy and require more aggressive treatment. Anaplastic means the cells divide rapidly and do not resemble healthy cells. About 10% of Wilms tumors have an anaplastic histology. Tumors in people who are 12 to 16 years old are more likely to be anaplastic.

  • The stage of the tumor. In general, a low-stage cancer is more likely to be successfully treated than a high-stage cancer. This is particularly true for Wilms tumors with an anaplastic histology. The stages are the same for tumors, regardless of histology.

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Information about the cancer’s stage and histology will help the doctor recommend a specific treatment plan. The next section in this guide is Types of Treatment. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Types of Treatment

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will learn about the different types of treatments doctors use to treat children with a Wilms tumor. Use the menu to see other pages.

In general, cancer in children is uncommon. This means it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That is why more than 60% of children with cancer receive treatment as part of a clinical trial.

Treatment for Wilms tumors is a success story for improving the prognosis of children with cancer using clinical trials. Clinical trials are research studies that compare the standard of care with newer approaches to treatments that may be more effective. The “standard of care” is the best treatments known based on previous clinical trials. Clinical trials may test such approaches as a new drug, a new combination of existing treatments, or new doses of current therapies. The health and safety of all children who participate in clinical trials are closely monitored.

To take advantage of these newer treatments, children with cancer should receive treatment at a specialized cancer center. Doctors at these centers have extensive experience in treating children with cancer and have access to the latest research. A doctor who specializes in treating children with cancer is called a pediatric oncologist. If a pediatric cancer center is not nearby, general cancer centers sometimes have pediatric specialists who are able to be part of your child’s care.

How a Wilms tumor is treated

In many cases, a team of doctors works with a child and their family to provide care. This is called a multidisciplinary team. Pediatric cancer centers often have extra support services for children and their families, such as child life specialists, dietitians, physical therapists, occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available. Learn more about the clinicians who provide cancer care.

The main treatments for a Wilms tumor are surgery, chemotherapy, and radiation therapy. Treatment options and recommendations depend on several factors, including:

  • The type, stage, and histology of the tumor

  • Possible side effects

  • The child and family’s preferences

  • The child’s overall health

Take time to learn about all of your child's treatment options and be sure to ask questions about things that are unclear. Also, talk about the goals of each treatment with your child's doctor and what you and your child can expect while they are receiving the treatment. These types of conversations are called “shared decision-making.” Shared decision-making is when you and your doctors work together to choose treatments that fit the goals of your child’s care. Shared decision-making is important for a Wilms tumor because there are different treatment options. Learn more about making treatment decisions.

The common types of treatments used for a Wilms tumor are described below. Your child's care plan also includes treatment for symptoms and side effects, an important part of cancer care. Learn more about preparing your child for treatment.

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Surgery

Surgery is the removal of the tumor and some surrounding healthy tissue during an operation. Surgery is a common treatment for all stages of a Wilms tumor. It is important that your child's surgeon has experience with removing Wilms tumors and, in some cases, experience with saving part of the kidney.

Surgery is usually performed by either a pediatric surgeon with experience in removing cancer in children or a pediatric urologist. A pediatric urologist is a doctor who specializes in treating urinary tract problems in children.

The types of surgery used to treat a Wilms tumor include:

  • Radical nephrectomy. A radical nephrectomy is the removal of the whole kidney and some surrounding tissue, as well as nearby lymph nodes. The surgical removal of the lymph nodes is called a lymph node dissection.

  • Partial nephrectomy. A partial nephrectomy is the removal of the tumor and some of the surrounding healthy tissue, leaving as much of the kidney as possible. A partial nephrectomy is performed when the other kidney is damaged, also contains a tumor, or has already been removed.

When 1 kidney is removed, the other kidney takes over the full job of filtering waste from the body. Dialysis may also be used if preserving 1 functioning kidney is not possible. Dialysis is when a machine does the filtering work of the kidneys.

Before surgery, talk with your child's health care team about the possible side effects from the specific surgery your child will have. Learn more about the basics of surgery.

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Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by keeping the tumor cells from growing, dividing, and making more cells. Chemotherapy for a Wilms tumor is given by a pediatric oncologist.

Chemotherapy may be given through the bloodstream to reach cancer cells throughout the body. When a drug is given this way, it is called systemic therapy. Chemotherapy for a Wilms tumor is usually given through an intravenous (IV) tube placed into a vein using a needle. Chemotherapy may also be given locally, which is when the medication is applied directly to the cancer or kept in a single part of the body.

A chemotherapy regimen, or schedule, usually consists of a specific number of cycles given over a set period of time. A person may receive 1 drug at a time or combinations of different drugs given at the same time. A Wilms tumor with a favorable histology is often treated with dactinomycin (Cosmegen) and vincristine (Vincasar PFS, Oncovin). In some cases, doxorubicin (Adriamycin) will also be added. Other drugs used to treat Wilms tumors include cyclophosphamide (Cytoxan, Neosar), etoposide (Toposar, VePesid), and irinotecan (Camptosar).

Chemotherapy can be given after surgery to eliminate any remaining cancer cells. When this is done, it is called adjuvant chemotherapy.

Sometimes, chemotherapy is given before surgery to shrink a tumor that is too large to remove or a tumor that is growing into blood vessels or other organs, making it too risky to remove. When this is done, it is called neoadjuvant chemotherapy.

The side effects of chemotherapy depend on the individual and the type of chemotherapy and dose used, but they can include fatigue, risk of infection, nausea and vomiting, hair loss, loss of appetite, and diarrhea. These side effects usually go away after treatment is finished.

Learn more about the basics of chemotherapy and preparing for treatment. The medications used to treat cancer are continually being evaluated. Talking with your child’s doctor is often the best way to learn about the medications prescribed for your child, their purpose, and their potential side effects or interactions with other medications.

It is also important to let your child's doctor know if your child is taking any other prescription or over-the-counter medications or supplements. Herbs, supplements, and other drugs can interact with cancer medications, causing unwanted side effects or reduced effectiveness. Learn more about your child’s prescriptions by using searchable drug databases.

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Radiation therapy

Radiation therapy is the use of high-energy x-rays or other particles to destroy cancer cells. A doctor who specializes in giving radiation therapy to treat a tumor is called a radiation oncologist.

The most common type of radiation treatment is called external-beam radiation therapy, which is radiation therapy given from a machine outside the body. When radiation treatment is given using implants, it is called internal radiation therapy or brachytherapy. A radiation therapy regimen, or schedule, usually consists of a specific number of treatments given over a set period of time.

Radiation therapy may be used to treat a large tumor or a tumor that has spread to other parts of the body. It may also be used to shrink a tumor before surgery or to destroy cancer cells that remain after surgery. Radiation therapy is usually part of the treatment plan for children with a stage III or IV Wilms tumor with a favorable histology and for all children who have a tumor with an anaplastic histology (see Stages for more information).

Side effects from radiation therapy depend on which part of the body is treated. For example, side effects from radiation therapy to the abdomen can include fatigue, mild skin reactions like redness or peeling, upset stomach, and loose bowel movements. Most side effects go away soon after treatment is finished. Learn more about the basics of radiation therapy.

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Physical, emotional, social, and financial effects of cancer

Cancer and its treatment cause physical symptoms and side effects, as well as emotional, social, and financial effects. Managing all of these effects is called palliative and supportive care. It is an important part of your child’s care that is included along with treatments intended to slow, stop, or eliminate the cancer.

Palliative and supportive care focuses on improving how your child feels during treatment by managing symptoms and supporting patients and their families with other, non-medical needs. Any person, regardless of age or type and stage of cancer, may receive this type of care. And it often works best when it is started right after a cancer diagnosis. People who receive palliative and supportive care along with treatment for the cancer often have less severe symptoms, better quality of life, and report that they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, emotional and spiritual support, and other therapies. Your child may also receive palliative treatments, such as chemotherapy, surgery, or radiation therapy, to improve symptoms.

Before treatment begins, talk with your child’s doctor about the goals of each treatment in the recommended treatment plan. You should also talk about the possible side effects of the specific treatment plan and palliative and supportive care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

Cancer care is often expensive, and navigating health insurance can be difficult. Ask your doctor or another member of your health care team about talking with a financial navigator or counselor who may be able to help with your financial concerns.

During treatment, your child’s health care team may ask you to answer questions about your child’s symptoms and side effects and to describe each problem. Be sure to tell the health care team if your child is experiencing a problem. This helps the health care team treat any symptoms and side effects as quickly as possible. It can also help prevent more serious problems in the future.

Learn more about the importance of tracking side effects in another part of this guide. Learn more about palliative and supportive care in a separate section of this website.

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Remission and the chance of recurrence

A remission is when cancer cannot be detected in the body and there are no symptoms. This may also be called having “no evidence of disease” or NED.

A remission may be temporary or permanent. This uncertainty causes many people to worry that the tumor will come back. While many remissions are permanent, it is important to talk with your child’s doctor about the possibility of your child’s tumor returning. Understanding your child’s risk of recurrence and the treatment options may help you and your child feel more prepared if the cancer does return. Learn more about coping with the fear of recurrence.

If the tumor returns after the original treatment, it is called a recurrent Wilms tumor. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

If a recurrence happens, a new cycle of testing will begin to learn as much as possible about it. After this testing is done, your child’s doctor will talk with you about the treatment options. The treatment plan for a recurrent Wilms tumor depends on 4 factors:

  • Where the cancer has returned in the body

  • The type of treatment your child received for the original tumor

  • How long it has been since the original tumor was treated

  • Whether the new growth has a favorable or anaplastic histology

Often the treatment plan will include the treatments described above, such as surgery, radiation therapy, and chemotherapy, but they may be used in a different combination or given at a different pace. Your child’s doctor may suggest clinical trials that are studying new ways to treat a recurrent Wilms tumor, including new medications. Whichever treatment plan you choose, palliative and supportive care will be important for relieving symptoms and side effects.

When a Wilms tumor recurs, children and their families sometimes experience emotions such as disbelief or fear. Families are encouraged to talk with their child's health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

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If treatment does not work

Although treatment is successful for many children with a Wilms tumor, sometimes it is not. If a child’s cancer cannot be cured or controlled, this is called advanced or terminal cancer. This diagnosis is stressful, and advanced cancer may be difficult to discuss. However, it is important to have open and honest conversations with your child’s health care team to express your family’s feelings, preferences, and concerns. The health care team has special skills, experience, and knowledge to support patients and their families and is there to help.

Hospice care is designed to provide the best possible quality of life for people who are expected to live less than 6 months. Parents and guardians are encouraged to talk with the health care team about hospice options, which include hospice care at home, a special hospice center, or other health care locations. Nursing care and special equipment can make staying at home a workable option for many families. Some children may be happier if they can attend school part-time or keep up other activities and social connections. Your child’s health care team can help you decide on an appropriate level of activity. Making sure a child is physically comfortable and free from pain is extremely important as part of end-of-life care. Learn more about caring for a terminally ill child and advanced cancer care planning.

The death of a child is an enormous tragedy, and families may need support to help them cope with the loss. Pediatric cancer centers often have professional staff and support groups to help with the process of grieving. Learn more on grieving the loss of a child.

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The next section in this guide is About Clinical Trials. It offers more information about research studies that are focused on finding better ways to care for children with a Wilms tumor. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - About Clinical Trials

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are studied to see how well they work. Use the menu to see other pages.

What are clinical trials?

Doctors and scientists are always looking for better ways to care for children with a Wilms tumor. To make scientific advances, doctors create research studies involving volunteers, called clinical trials. Every drug that is now approved by the U.S. Food and Drug Administration (FDA) was tested in clinical trials.

There has been much progress made in treating Wilms tumor in the past 20 years. In fact, Wilms tumor is one of the best examples of the impact that clinical trials have on finding the best treatment approaches to improve outcomes and reduce side effects.

Clinical trials are used for all types and stages of Wilms tumor. Many focus on new treatments to learn if a new treatment is safe, effective, and possibly better than the existing treatments. These types of studies evaluate new drugs, different combinations of existing treatments, new approaches to radiation therapy or surgery, and new methods of treatment. 

Children who participate in clinical trials can be some of the first to get a treatment before it is available to the public. However, there are some risks with a clinical trial, including possible side effects and the chance that the new treatment may not work. People are encouraged to talk with their health care team about the pros and cons of joining a specific study.

Some clinical trials study new ways to relieve symptoms and side effects during treatment. Others study ways to manage the late effects that may happen a long time after treatment. Talk with your child's doctor about clinical trials for symptoms and side effects.

Deciding to join a clinical trial

Parents and children decide to participate in clinical trials for many reasons. For some, a clinical trial is the best treatment option available. Because standard treatments are not perfect, patients are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Others volunteer for clinical trials because they know that these studies are a way to contribute to the progress in treating Wilms tumors. Even if your child does not benefit directly from the clinical trial, their participation may benefit future children with a Wilms tumor.

Insurance coverage and the costs of clinical trials differ by location and by study. In some programs, some of the person's expenses from participating in the clinical trial are reimbursed. In others, they are not. It is important to talk with the research team and your insurance company first to learn if and how your child's treatment in a clinical trial will be covered. Learn more about health insurance coverage of clinical trials.

Sometimes people have concerns that, in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” You and your child will always be told when a placebo is used in a study. Find out more about placebos in cancer clinical trials.

Patient safety and informed consent

To join a clinical trial, parents and children must participate in a process known as informed consent. Informed consent means that parents give permission for their child to participate in a clinical trial and that teenagers give their consent to participate. During informed consent, the doctor should:

  • Describe all of the treatment options so the parents and children understand how the new treatment differs from the standard treatment.

  • List all of the risks of the new treatment, which may or may not be different from the risks of standard treatment.

  • Explain what will be required of each parent and child in order to participate in the clinical trial, including the number of doctor visits, tests, and the schedule of treatment.

  • Describe the purposes of the clinical trial and what researchers are trying to learn.

Clinical trials also have certain rules called “eligibility criteria” that help structure the research and keep people safe. You and the research team will carefully review these criteria together. You will need to meet all of the eligibility criteria in order to participate in a clinical trial. Learn more about eligibility criteria in clinical trials.

People who participate in a clinical trial may stop participating at any time for personal or medical reasons. This may include that the new treatment is not working or there are serious side effects. Clinical trials are also closely monitored by experts who watch for any problems with each study. It is important that parents of children participating in a clinical trial talk with their child’s doctor and researchers about who will be providing treatment and care during the clinical trial, after the clinical trial ends, and/or if they choose to leave the clinical trial before it ends.

Finding a clinical trial

Research through clinical trials is ongoing for all types of cancer. For specific topics being studied for Wilms tumors, learn more in this guide's Latest Research section.

Cancer.Net offers more information about cancer clinical trials in other areas of the website, including a complete section on clinical trials. The Children’s Oncology Group (COG) conducts clinical trials for most types of childhood cancer, including Wilms tumors. (Please note the COG link takes you to a separate, independent website.)

There are many resources and services to help you search for clinical trials for Wilms tumor, including the following services. Please note that these links will take you to separate, independent websites:

  • ClinicalTrials.gov. This U.S. government database lists publicly and privately supported clinical trials.

  • World Health Organization (WHO) International Clinical Trials Registry Platform. The WHO coordinates health matters within the United Nations. This search portal gathers clinical trial information from many countries’ registries.

Read more about the basics of clinical trials matching services.

PRE-ACT, Preparatory Education About Clinical Trials

In addition, you can find a free video-based educational program about cancer clinical trials in another section of this website.

The next section in this guide is Latest Research. It explains areas of scientific research for Wilms tumor. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Latest Research

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will read about the scientific research being done to learn more about Wilms tumors and how to treat them. Use the menu to see other pages.

Doctors are working to learn more about Wilms tumors, ways to prevent them, how to best treat them, and how to provide the best care to people diagnosed with this disease. The following areas of research may include new options for people through clinical trials. Always talk with your child’s doctor about the best diagnostic and treatment options for your child.

  • Bilateral Wilms tumors. The Children’s Oncology Group is studying how to best treat bilateral Wilms tumors (see Introduction) while preserving as much kidney function as possible.

  • Tumor markers. A tumor marker, also called a biomarker, is a substance found in a person's blood, urine, or body tissue at a level that indicates a possible disease. Researchers have found that Wilms tumors with a favorable histology and changes in chromosome 1q are more likely to come back after treatment. In the future, biomarkers such as chromosome 1p, 11p, and 16q may be used to determine whether a patient needs chemotherapy and, if so, whether more intensive chemotherapy may be needed.

  • Tumor genetics. Another Wilms tumor gene has been identified on the X chromosome, called WTX. This gene plays a role in normal kidney development, but it is not active in about one-third of children with a Wilms tumor. Studies on the importance of this gene are ongoing.

  • Targeted therapy. Targeted therapy is a treatment that targets the cancer’s specific genes, proteins, or the tissue environment that contributes to cancer growth and survival. This type of treatment blocks the growth and spread of cancer cells while limiting damage to healthy cells.

  • New treatment approaches for tumors that have spread to the lungs. Researchers are trying to figure out if a child with Wilms tumor with a favorable histology that has spread to the lungs still needs to get radiation therapy to the lungs if the lung tumors have gone away after 6 weeks of chemotherapy. If the lung tumors have not gone away in addition to radiation therapy, different chemotherapy may be used to help get rid of these tumors.

  • New treatment methods. Doctors are looking at the effect of using only surgery as a treatment for people with a small, stage I Wilms tumor. After surgery, patients are watched closely by their health care team for a recurrence.

  • Palliative and supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current Wilms tumor treatments to improve comfort and quality of life for children.

Looking for More About the Latest Research?

If you would like more information about the latest areas of research in Wilms tumors, explore these related items that will take you outside of this guide:

The next section in this guide is Coping with Treatment. It offers some guidance on how to cope with the physical, emotional, social, and financial changes that cancer and its treatment can bring. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Coping with Treatment

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will learn more about coping with the physical, emotional, social, and financial effects of childhood cancer and its treatment. Use the menu to see other pages.

Every cancer treatment can cause side effects or changes to your child’s body and how they feel. For many reasons, people do not experience the same side effects even when they are given the same treatment as another person who has a tumor with the same histology. This can make it hard to predict how your child will feel during treatment.

READ MORE BELOW:

As your family prepares to start treatment, it is normal to fear treatment-related side effects. It may help to know that your child's health care team will work to prevent and relieve side effects. This part of treatment is called palliative and supportive care. It is an important part of your child’s treatment plan, regardless of their age or the stage of disease.

Coping with physical side effects

Common physical side effects from each treatment option for a Wilms tumor are described in the Types of Treatment section. Learn more about side effects of cancer and its treatment, along with ways to prevent or control them. Changes to your child’s physical health depend on several factors, including the tumor’s stage, the length and dose of treatment, and your child’s general health.

It is important to discuss any new side effects or changes in existing side effects with your child’s health care team. Providing this information helps them find ways to treat or manage the side effects so your child feels more comfortable and can potentially keep any side effects from worsening.

You may find it helpful to keep track of your child’s side effects so you are prepared to discuss any changes with the health care team. Learn more about why tracking side effects is helpful.

Sometimes, side effects can last after treatment ends. Doctors call these long-term side effects. Side effects that occur months or years after treatment are called late effects. Treating long-term side effects and late effects is an important part of care for childhood cancer survivors. Learn more by reading the Follow-Up Care section of this guide or by talking with your child’s doctor.

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Coping with emotional and social effects

Your family can have emotional and social effects after a cancer diagnosis. This may include dealing with a variety of emotions, such as sadness, anxiety, fear, or anger, or managing stress. Sometimes, people find it difficult to express how they feel to their loved ones. Some have found that talking to an oncology social worker, counselor, or member of the clergy can help them develop more effective ways of coping and talking about cancer.

You can also find coping strategies for emotional and social effects in a separate section of this website. This section includes many resources for finding support and information to meet your family’s needs.

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Coping with the costs of cancer care

Cancer treatment can be expensive. It can be a source of stress and anxiety for families dealing with a cancer diagnosis. In addition to treatment costs, many people find they have extra, unplanned expenses related to their child’s care. Families are encouraged to talk about financial concerns with a member of their health care team. Learn more about managing financial considerations in a separate part of this website.

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Coping with barriers to care

Some groups of people experience different rates of new cancer cases and experience different outcomes from their cancer diagnosis. These differences are called “cancer disparities.” Disparities are caused in part by real-world barriers to quality medical care and social determinants of health, such as where a person lives and whether they have access to food and health care. Cancer disparities more often negatively affect racial and ethnic minorities, people with fewer financial resources, sexual and gender minorities (LGBTQ+), adolescent and young adult populations, adults older than 65, and people who live in rural areas or other underserved communities.

If your child is having difficulty getting the care they need, talk with a member of the health care team or explore other resources that help support medically underserved people.

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Talking with your child's health care team about side effects

Before starting treatment, talk with your child’s doctor about possible side effects. Ask:

  • Which side effects are most likely?

  • When are they likely to happen?

  • What can we do to prevent or relieve them?

  • When and who should we call about side effects?

Be sure to tell your child's health care team about any side effects that happen during treatment and afterward, too. Tell them even if you do not think that the side effects are serious. This discussion should include physical, emotional, social, and financial effects of cancer.

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Caring for a child with a Wilms tumor

Family members and friends often play an important role in taking care of a child with a Wilms tumor. This is called being a caregiver. As a parent or guardian, you are the primary caregiver for your child. However, friends and family members can give your family valuable support, even if they live far away.

When your child has cancer, you may have an additional range of responsibilities. These may include giving medications or managing symptoms and side effects. However, it is important to seek help from others. Below are some of the responsibilities your family or friends could help with:

  • Providing short-term care for your child

  • Giving support and encouragement

  • Assisting with meals or household chores

  • Helping with insurance and billing issues

A caregiving plan can help caregivers stay organized and help identify opportunities to delegate tasks to others. Ask how much care your child may need at home and with daily tasks during and after treatment. Use this 1-page fact sheet that includes an action plan to help make caregiving a team effort. This free fact sheet is available as a PDF, so it is easy to print.

Learn more about caregiving or read the ASCO Answers Guide to Caring for a Loved One With Cancer in English or Spanish.

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Looking for More on How to Track Side Effects?

Cancer.Net offers several resources to help you keep track of symptoms and side effects. Please note that these links will take you to other sections of Cancer.Net:

  • ASCO Answers Fact Sheets: Read 1-page fact sheets on anxiety and depression, constipation, diarrhea, and rash that provide a tracking sheet to record details about the side effect. These free fact sheets are available as a PDF, so they are easy to print, fill out, and give to your health care team.

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The next section in this guide is Late Effects of Treatment. It describes some of the side effects that can occur long after treatment has finished. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Late Effects of Treatment

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will find out more about side effects that can occur long after treatment for a Wilms tumor has finished. Use the menu to see other pages.

Although many children with a Wilms tumor are successfully treated for cancer, they often have an increased risk of developing other diseases or conditions later in life. This is because chemotherapy and radiation therapy can cause permanent damage to healthy parts of the body. Therefore, it is important that children who have received treatment for a Wilms tumor are monitored closely for possible long-term or late effects of the treatment. These may include:

  • Kidney failure. Because children who receive treatment for Wilms tumor usually have only 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 help promote good kidney health. There are some medications such as codeine and ibuprofen that should only be taken in small amounts to avoid kidney damage.

  • Bowel obstruction. Children who have certain types of surgery may develop scar tissue that puts them at risk for developing a bowel obstruction throughout their lives. A bowel obstruction will cause abdominal pain and vomiting.

  • Heart problems. Children who receive doxorubicin have a higher risk of developing heart abnormalities, even years after treatment has ended. Children who receive doxorubicin and radiation therapy to the lungs have an even higher risk of developing heart problems. An echocardiogram may be used to check on the effects of doxorubicin on the heart. The medication dexrazoxane can be given right before doxorubicin to decrease the risk of developing heart abnormalities.

  • Lung problems. Children whose cancer had spread to their lungs and who received radiation therapy to that location are at risk for developing lung problems after treatment has ended. Pulmonary function tests can be done to see if there are any changes to the lungs.

  • Skeletal abnormalities. Scoliosis, or curvature of the spine, and underdevelopment of nearby soft tissue may happen in children who received radiation therapy. This risk depends on the location and dose of the radiation therapy.

  • Second cancer. Wilms tumor survivors have a small risk of developing another type of cancer, called a second cancer, within 15 years after the Wilms tumor was first diagnosed. The most important risk factors for a second cancer are whether treatment included radiation therapy and doxorubicin. For example, young girls who have radiation therapy to their chest to treat a Wilms tumor that has spread to the lungs have an increased risk of developing breast cancer.

  • Pregnancy concerns. People who had abdominal radiation therapy for a Wilms tumor should be considered "high risk" during pregnancy and closely monitored by their doctors. Chemotherapy alone does not increase the risk of a miscarriage. However, people who received radiation therapy aimed at the side of the body between the rib and hip, depending on the dose, are more likely to have early labor, an unusual position of the baby’s head during birth, lower birth weight, and premature delivery (less than 36 weeks) based on National Wilms Tumor Study records.

  • Fertility concerns. Young girls who received radiation to their entire abdomen for a Wilms tumor may experience fertility problems when they get older or experience premature menopause. They need to be monitored closely during puberty and may need to be referred to a reproductive endocrinologist, which is a fertility expert, during this time.

  • Dental problems. Depending on the age of the child when they were diagnosed and treated for a Wilms tumor, they may experience dental issues, including problems with teeth formation, enamel issues, or missing teeth. Regular dental care is very important.

The next section in this guide is Follow-Up Care. It explains the importance of checkups after your child finishes cancer treatment. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Follow-Up Care

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will read about your child’s medical care after treatment for Wilms tumor is finished and why this follow-up care is important. Use the menu to see other pages.

Care for children diagnosed with cancer does not end when active treatment has finished. Your child’s health care team will continue to check that the Wilms tumor has not come back, manage any side effects, and monitor your child’s overall health. This is called follow-up care. All children who receive treatment for cancer, including a Wilms tumor, should have life-long, follow-up care.

Your child’s follow-up care may include regular physical examinations, medical tests, or both. Doctors want to keep track of your child’s recovery in the months and years ahead. Follow-up care for a Wilms tumor includes regular visits to the doctor for physical examinations, blood and urine tests, and imaging tests, such as computed tomography (CT) scans, ultrasounds, and x-rays. At first, these visits and tests will be frequent, such as every 3 months. The time between checkups will increase until 5 years after treatment, when your child will start to be scheduled for a follow-up visit once a year.

Cancer rehabilitation may be recommended, and this could mean any of a wide range of services such as physical therapy, occupational therapy, family or individual counseling, nutritional planning, and/or educational assistance. The goal of rehabilitation is to help survivors and their families regain control over many aspects of their lives and remain as independent as possible. Learn more about cancer rehabilitation.

Learn more about the importance of follow-up care.

Watching for recurrence

One goal of follow-up care is to check for a recurrence, which means that the cancer has come back. Cancer recurs because small areas of cancer cells may remain undetected in the body. Over time, these cells may increase in number until they show up on test results or cause signs or symptoms. A recurrence of a Wilms tumor is unlikely, but if it does happen, it is generally within the first 2 years after treatment ends.

During follow-up care, a doctor familiar with your child’s medical history can give you personalized information about the risk of recurrence. The doctor will ask specific questions about your child’s health. Some children may have blood tests or imaging tests as part of regular follow-up care, but testing recommendations depend on several factors, including the type and stage of tumor first diagnosed and the types of treatment given.

The anticipation before having a follow-up test or waiting for test results may add stress to you or a family member. This is sometimes called “scanxiety.” Learn more about how to cope with this type of stress.

Managing long-term and late side effects of childhood cancer

The more time that has passed since treatment has ended, the less likely it is that the tumor will return. At this point, monitoring for late effects that can occur months or even years after treatment has ended becomes a main part of follow-up visits. Late effects can occur almost anywhere in the body. They include physical problems, such as heart and lung problems or a second cancer, which is a new cancer that happens in someone who has had cancer before. They also include emotional challenges, such as anxiety and depression, and problems with memory, thinking, attention, and learning.

Based on the type of treatment your child received, the doctor will recommend the examinations and tests needed to check for late effects. Usually, people will have blood tests to make sure no changes have occurred in their kidney function. This is especially important for people who have 1 kidney or who had a partial nephrectomy. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns.

The Children's Oncology Group (COG) has studied the physical and psychological effects that childhood cancer survivors face. Based on these studies, COG has created recommendations for long-term follow-up care for childhood, adolescent, and young adult cancer survivors that can be found on a separate website.

Keeping a child’s personal health record

You are encouraged to organize and keep a personal record of your child’s medical information. The doctor will help you create this. That way, as your child enters adulthood, they have a clear, written history of the diagnosis, the treatments, and the doctor’s recommendations about the schedule for follow-up care. The American Society of Clinical Oncology (ASCO) offers forms to help keep track of the cancer treatment your child received and develop a survivorship care plan when treatment is completed.

Some children continue to see their oncologist, while others transition back to the care of their pediatrician, primary care doctor, or another health care professional. This decision depends on several factors, including:

  • The type and stage of tumor

  • Treatments received

  • Side effects

  • Health insurance rules

  • Your family’s personal preferences

Talk with the health care team about your child’s ongoing medical care and any concerns you have about their future health.

If a doctor who was not directly involved in your child’s cancer care will lead the follow-up care, be sure to share the cancer treatment summary and survivorship care plan forms with them and with all future health care providers. Details about the specific cancer treatment given are very valuable to the health care professionals who will care for your child throughout their lifetime.

The next section in this guide is Survivorship. It describes how to cope with challenges in everyday life after a cancer diagnosis. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Survivorship

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will read about how to cope with challenges in everyday life after your child’s cancer diagnosis. Use the menu to see other pages.

What is survivorship?

The word “survivorship” means different things to different people, but it often describes living with, through, and beyond cancer. In some ways, survivorship is one of the most complicated parts of the cancer experience because it is different for every child and their family.

After active cancer treatment ends, children and their families may experience a mixture of strong feelings, including joy, concern, relief, guilt, and fear. Some people say they appreciate life more after a cancer diagnosis. Other families stay very anxious about their child’s health and become uncertain about coping with everyday life.

One source of stress may occur when the child's frequent visits to the health care team end after completing treatment. Often, relationships built with the cancer care team provide a sense of security during treatment, and children and their families miss this source of support. This may be especially true when new worries and challenges surface over time, such as any late effects of treatment, learning or school problems, emotional challenges, sexual development and fertility concerns, and/or financial issues.

Every family faces different concerns and challenges. With any challenge, a good first step is being able to recognize each fear and talk about it. Effective coping requires:

  • Understanding the challenge your family is facing

  • Thinking through solutions

  • Asking for and allowing the support of others

  • Feeling comfortable with the course of action your family chooses

It may be helpful for your child to join an in-person support group or online community of childhood cancer survivors. Support groups also exist for parents of children diagnosed with cancer. This allows you to talk with people who have had similar first-hand experiences. Other options for finding support include talking with a friend or member of the health care team, individual counseling, or asking for assistance at the learning resource center of the place where your child received treatment.

Healthy living after cancer

Survivorship often serves as a strong motivator to make lifestyle changes, often for the whole family.

Children who have had cancer can enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, limiting alcohol, maintaining a healthy weight, eating well, managing stress, and participating in regular physical activity. Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about making healthy lifestyle choices.

It is important that your child has recommended medical checkups and tests (see Follow-Up Care) to take care of their health.

Talk with the doctor to develop a survivorship care plan that is best for your child’s needs.

Changing role of caregivers

Parents, other family members, and friends may also go through periods of transition. A caregiver plays a very important role in supporting a child diagnosed with cancer, providing physical, emotional, and practical care on a daily or as-needed basis. Many caregivers become focused on providing this support, especially if the treatment period lasts for many months or longer.

However, as treatment is completed, the caregiver's role often changes. Eventually, the need for caregiving related to a child’s cancer diagnosis will become much less or come to an end as your child gets older. Family counselors at pediatric cancer centers can help with this transition. You can also learn more about adjusting to life after caregiving.

Looking for More Survivorship Resources?

For more information about cancer survivorship, explore these related items. Please note that these links will take you to other sections of Cancer.Net:

  • Survivorship Resources: Cancer.Net offers information and resources to help survivors cope, including specific sections for children and teens and young adults. There is also a main section on survivorship for people of all ages.

  • ASCO Answers Guide to Cancer Survivorship: Get this 48-page booklet that helps people transition into life after treatment. It includes blank treatment summary and survivorship care plan forms. The free booklet is also available as a PDF, so it is easy to print.

The next section offers Questions to Ask the Health Care Team to help start conversations with your child’s cancer care team. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Questions to Ask the Health Care Team

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will find some questions to ask your child's doctor or other members of the health care team to help you and your child better understand their diagnosis, treatment plan, and overall care. Use the menu to see other pages.

Talking often with the health care team is important to make informed decisions about your child’s health care. These suggested questions are a starting point to help you learn more about your child’s cancer care and treatment. You are also encouraged to ask additional questions that are important to your family. You may want to print this list and bring it to your child's next appointment. It may also be helpful to ask a family member or friend to come with you to appointments to help take notes.

Questions to ask after getting a diagnosis

  • Can you explain my child’s pathology report (laboratory test results) and radiology reports (imaging test results) to me?

  • What is the histology of the tumor? What does this mean?

  • What is the stage of the tumor? What does this mean?

  • Can you give me copies of these reports so I can have a record of them?

Questions to ask about choosing a treatment and managing side effects

  • What are my child’s treatment options?

  • What types of research are being done for Wilms tumor in clinical trials? Do clinical trials offer additional treatment options for my child?

  • What treatment plan do you recommend? Why?

  • What is the goal of each treatment? Is it to eliminate the cancer, help my child feel better, or both?

  • What are the possible side effects of each treatment option, both in the short term and the long term?

  • Who will be part of my child’s health care team, and what does each member do?

  • Who will be leading my child’s overall treatment?

  • How long will my child receive treatment?

  • How will this treatment affect my child’s daily life? Will they be able to go to school and perform their usual activities?

  • What should I do if my child has abdominal pain with vomiting?

  • Will this treatment change how my child goes through puberty?

  • Will this treatment affect my child’s dental care?

  • Can my child play sports and, if so, which ones? Are there any precautions we need to take when they participate in sports?

  • Could this treatment affect my child’s ability to become pregnant or have children in the future? If so, should we talk with a fertility specialist before treatment begins?

  • If my child has children in the future, what is their child's risk of developing a Wilms tumor?

  • If I’m worried about managing the costs of medical care, who can help me?

  • What support services are available to my child? To my family?

  • If we have questions or problems, who should I call?

Questions to ask about having surgery

  • What type of surgery will my child have?

  • How long will the operation take?

  • How long will my child need to be in the hospital?

  • Can you describe what the recovery from surgery will be like?

  • Who should I contact about any side effects my child experiences? And how soon?

  • What are the possible long-term or late effects of having this surgery?

  • What can be done to prevent or relieve the side effects?

Questions to ask about having chemotherapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • Will my child receive this treatment at a hospital or clinic? Or will they take it at home?

  • What side effects can my child expect to experience during treatment?

  • Will my child have pain or be uncomfortable while receiving this treatment?

  • Who should I contact about any side effects my child experiences? And how soon?

  • What are the possible long-term or late effects of having this treatment?

  • What can be done to prevent or relieve these side effects?

Questions to ask about having radiation therapy

  • What type of treatment is recommended?

  • What is the goal of this treatment?

  • How long will it take to give this treatment?

  • Will my child receive this treatment at a hospital or clinic? Or will they take it at home?

  • What side effects can my child expect to experience during treatment?

  • Will my child have pain or be uncomfortable while receiving this treatment?

  • Who should I contact about any side effects my child experiences? And how soon?

  • What are the possible long-term or late effects of having this treatment?

  • What can be done to prevent or relieve these side effects?

Questions to ask about planning follow-up care

  • What is the chance that the tumor will come back? Should I watch for specific signs or symptoms?

  • What long-term side effects or late effects are possible based on the treatment my child received?

  • What follow-up tests will my child need, and how often will those tests be needed?

  • How do I get a treatment summary and survivorship care plan to keep in my child’s personal records?

  • When should my child return to their primary care doctor for regular medical care?

  • Who will be leading my child’s follow-up care?

  • How long will my child need follow-up care?

  • What survivorship support services are available to my child? To my family?

The next section in this guide is Additional Resources. It offers more resources on this website that may be helpful to you. Use the menu to choose a different section to read in this guide.

Wilms Tumor - Childhood - Additional Resources

Approved by the Cancer.Net Editorial Board, 07/2023

ON THIS PAGE: You will find some helpful links to other areas of Cancer.Net that provide information about cancer care and treatment. This is the final page of Cancer.Net’s Guide to Wilms Tumor - Childhood. Use the menu to go back and see other pages.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer for the child diagnosed and their family members and friends. This website is meant to be a resource for you and your loved ones from the time of diagnosis, through treatment, and beyond.

Here are a few links to help you explore other parts of Cancer.Net:

This is the end of the Cancer.Net’s Guide to Wilms Tumor - Childhood. Use the menu to select another section, to continue reading this guide.