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Wilms Tumor - Childhood - Overview

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

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. To see other pages, use the menu on the side of your screen. Think of that menu as a roadmap to this full guide.

Wilms tumor is a type of cancer that begins in a child’s kidney. Every person has two kidneys. They are bean-shaped organs located above the waist on both sides of the spine. They are closer to the back of the body than the front. The kidneys filter waste from the blood and make urine.

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. 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 three or four years old, but some may grow uncontrollably, forming a mass of immature cells. This mass is called a Wilms tumor; it can also be called a nephroblastoma.

Wilms tumor is the most common type of kidney cancer in children and is very different from adult kidney cancer. Wilms tumor usually occurs in only one kidney, called unilateral, although it can develop in both kidneys, called bilateral. Rarely, Wilms tumor develops in one kidney first and then the other. Wilms tumor is often found only after it has grown to a size of about eight ounces—about four times the weight of a healthy three-year-old child’s kidney. About one out of four children with Wilms tumor have evidence that the tumor has spread either to the lung or liver when it is first diagnosed.

Looking for More of an Overview?

If you would like additional introductory information, explore these related items. Please note these links will take you to other sections on Cancer.Net:

  • ASCO Answers Fact Sheet: Read a one-page fact sheet (available as a PDF) that offers an easy-to-print introduction to this type of cancer.
  • Cancer.Net Patient Education Video: View a short video led by an ASCO expert in childhood cancers that provides basic information and areas of research.

To continue reading this guide, use the menu on the side of your screen to select another section.

Wilms Tumor - Childhood - Statistics

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will find information about how many children learn they have this type of tumor each year and some general survival information. Remember, survival rates depend on several factors. To see other pages, use the menu on the side of your screen.

In the United States, about 500 children are diagnosed with Wilms tumor each year. It accounts for about 5% of all childhood cancers. Wilms tumor occurs most often in children age five or younger.

The five-year survival rate is the percentage of children who survive at least five years after the tumor is detected, excluding those who die from other diseases. The five-year survival rate for children with Wilms tumor is 90%.

Survival statistics should be interpreted with caution. These estimates are based on data from thousands of people with this type of tumor, but the actual risk for a particular individual may differ. It is not possible to tell a person how long he or she will live with Wilms tumor. Because the survival statistics are measured in five-year intervals, they may not represent advances made in the treatment or diagnosis of this cancer. Learn more about understanding statistics.

Statistics adapted from the American Cancer Society's publication, Cancer Facts and Figures 2014.

To continue reading this guide, use the menu on the side of your screen to select another section.  

Wilms Tumor - Childhood - Risk Factors

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will find out more about the factors that increase the chance of developing this type of tumor. To see other pages, use the menu on the side of your screen.

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

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

  • Children may have a mutated (changed), damaged, or missing gene; such a change can also cause other birth defects. About 15% of children with Wilms tumor also have other health problems at the time of their birth.
  • Children with WAGR syndrome, a condition that causes a number of birth defects, have a 33% chance of developing Wilms tumor. WAGR stands for Wilms tumor, aniridia (no iris in the eye), genitourinary abnormalities (changes to the reproductive and urinary organs) or gonadoblastoma (a rare tumor of the reproductive organs), and mental retardation.
  • Children with Beckwith-Wiedemann syndrome, a condition that causes enlarged internal organs and limbs, have a higher risk of developing Wilms tumor, kidney cysts, and tumors of the liver (hepatoblastoma), pancreas, and adrenal glands.
  • Boys with Deny-Drash syndrome, a condition in which the male sex organs do not develop correctly, have a higher risk of developing Wilms tumor.
  • A small number of children with Wilms tumor have a relative in their family with the disease.

To continue reading this guide, use the menu on the side of your screen to select another section.

Wilms Tumor - Childhood - Symptoms and Signs

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will find out more about body changes and other things that can signal a problem that may need medical care. To see other pages, use the menu on the side of your screen.

Children with Wilms tumor may experience the following symptoms or signs. Sometimes, children with Wilms tumor do not show any of these symptoms. Or, these symptoms may be caused by a medical condition that is not a tumor. 

Usually, 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 tumor. A few children have abdominal pain, but most of the time the tumor grows without causing pain, and the child feels and appears healthy.

Frequently, children with Wilms tumor may experience the following symptoms:

  • Blood in the urine 
  • High blood pressure
  • Anemia, which is a low level of red blood cells
  • Fatigue
  • A fever that doesn’t go away

If you are concerned about one or more of the symptoms or signs on this list, please talk with your child’s doctor. The doctor will ask how long and how often your child has been experiencing the symptom(s), in addition to other questions. This is to help find out the cause of the problem, called a diagnosis.

If cancer is diagnosed, relieving symptoms remains an important part of your child’s cancer care and treatment. This may also be called symptom management, palliative care, or supportive care. Be sure to talk with your child’s health care team about symptoms your child experiences, including any new symptoms or a change in symptoms.

The next section helps explain what tests and scans may be needed to learn more about the cause of the symptoms. Use the menu on the side of your screen to select Diagnosis, or you can select another section, to continue reading this guide.

Wilms Tumor - Childhood - Diagnosis

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will find a list of the common tests, procedures, and scans that doctors can use to find out what’s wrong and identify the cause of the problem. To see other pages, use the menu on the side of your screen.

Doctors use many tests to diagnose a tumor and find out if it has spread to another part of the body, called metastasis. Some tests may also determine which treatments may be the most effective. For most tumors, a biopsy is the only way to make a definitive diagnosis of cancer. If a biopsy is not possible, the doctor may suggest other tests that will help make a diagnosis. Imaging tests may be used to find out whether the tumor has spread. This list describes options for diagnosing this type of cancer, and not all tests listed will be used for every child. Your child’s doctor may consider these factors when choosing a diagnostic test:

  • Age and medical condition
  • Type of cancer suspected
  • Signs and symptoms
  • Previous test results

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

Blood/urine tests. Doctors will take samples of your child’s blood and urine so tests can be done to learn more about the tumor and your child’s general health.

X-ray. An x-ray is a way to create a picture of the structures inside of the body, using a small amount of radiation.

Ultrasound. An ultrasound uses sound waves to create a picture of the internal organs. A transmitter that emits sound waves is moved over the body. A tumor generates 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.

Computed tomography (CT or CAT) scan. A CT scan creates a three-dimensional picture of the inside of the body with an x-ray machine. A computer then combines these images into a detailed, cross-sectional view that shows any abnormalities or tumors. A CT scan can also 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 patient’s vein or given as a pill 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 and particularly the inferior vena cava, which is the major vein that carries blood from the legs, pelvis, and abdomen to the heart. If this is the case, chemotherapy will often be given before surgery (see the Treatment Options section). A chest CT may be used to find out if the tumor has spread to the lungs.

Magnetic resonance imaging (MRI). An MRI uses magnetic fields, not x-rays, to produce detailed images of the body. MRI can also 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 patient’s vein or given as a pill 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 uses a radioactive tracer to look at the inside of the bones. The tracer is injected into a patient’s vein. It collects in areas of the bone and is detected by a special camera. Healthy bone appears gray to the camera, and areas of injury, such as those caused by cancer, appear dark.

Surgery and biopsy. To diagnose Wilms tumor, the doctor usually performs an abdominal operation, called a laparotomy, and removes the affected kidney and tumor. If the tumor is too large to be removed, the doctor will perform a biopsy only, removing a small amount of tissue for examination under a microscope. In either case, the sample of the tumor removed during surgery is analyzed by a pathologist to determine whether cancer cells are present. A pathologist is a doctor who specializes in interpreting laboratory tests and evaluating cells, tissues, and organs to diagnose disease.

Chromosome tests. A test for changes in chromosomes 1 and 16 may be done on the tumor tissue removed during the biopsy (see above). A tumor with changes in both these chromosomes does not respond as well to standard treatment. Current research studies for Wilms tumor use more chemotherapy to treat children with a tumor that has these changes (see the Treatment Options section).

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

The next section helps explain the different stages for this type of tumor. Use the menu on the side of your screen to select Stages, or you can select another section, to continue reading this guide.

Wilms Tumor - Childhood - Stages

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will learn about how doctors describe a tumor’s growth or spread. This is called the stage. To see other pages, use the menu on the side of your screen.

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 to decide what kind of treatment is best and can help predict a child's prognosis, which is the chance of recovery. There are different stage descriptions for different types of tumors. Wilms tumor is staged based on the results of surgery, analysis of the tumor cells (see the Diagnosis section), and whether it has spread.

The two most important factors that predict the prognosis for a child with Wilms tumor are:

  • What the tumor cells look like under a microscope, called the histology of the tumor. A favorable histology is usually associated with a better prognosis. An anaplastic histology is less likely to be successfully treated with chemotherapy and/or radiation therapy and requires more aggressive treatment.
  • The stage of the tumor. Early-stage cancer is more likely to be successfully treated than later-stage cancer.

Stage I. The tumor is in one 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 part of the kidney through which blood and fluid enter and exit the organ, called the renal sinus. 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 tiny, 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 lymph nodes outside the abdomen.

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

Recurrent. A recurrent 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 there is a recurrence, the cancer may need to be staged again (re-staging) using the system above.

Source: National Wilms Tumor Study Group Staging System.

Information about the tumor’s stage will help the doctor recommend a treatment plan.  The next section helps explain the treatment options for this type of tumor. Use the menu on the side of your screen to select Treatment Options, or you can select another section, to continue reading this guide.

Wilms Tumor - Childhood - Treatment Options

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will learn about the different ways doctors use to treat children with this type of tumor. To see other pages, use the menu on the side of your screen.

In general, cancer in children is uncommon, so it can be hard for doctors to plan treatments unless they know what has been most effective in other children. That’s why more than 60% of children with cancer are treated as part of a clinical trial. Clinical trials are research studies that compare standard treatments (the best proven treatments available) with newer approaches to treatments that may be more effective. Clinical trials may test such approaches as a new drug, a new combination of standard treatments, or new doses of current therapies. Studying new treatments involves careful monitoring using scientific methods, and all participants are followed closely to track their health and progress.

Wilms tumor is a success story for improving the prognosis of children with cancer using clinical trials involving chemotherapy, surgery, and radiation therapy. To take advantage of these newer treatments, all children with cancer should be treated 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. In many cases, a team of doctors works with a child and the 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, nutritionists, physical and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

Descriptions of the most common treatment options for Wilms tumor are listed below. The main treatments for Wilms tumor are surgery, chemotherapy, and radiation therapy. Treatment options and recommendations depend on several factors, including the type and stage of cancer, possible side effects, and the child and family’s preferences and overall health. Your child’s care plan may also include treatment for symptoms and side effects, an important part of cancer care. 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 receiving the treatment. Learn more about making treatment decisions.

Surgery

Surgery is the removal of the tumor and surrounding tissue during an operation. Surgery is a common treatment for all stages of Wilms tumor. It will usually be performed by either a pediatric surgeon with experience 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 include the following:

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 kidney, leaving as much of the kidney as possible.

When one kidney is removed, the other kidney takes over the full job of filtering wastes from the body. A partial nephrectomy is performed when the other kidney is damaged, also contains a tumor, or has already been removed. Dialysis, a mechanized filtering process, may also be used if this is not possible. Talk with the health care team about the possible side effects of your child’s specific surgery and how they can be reduced or relieved.

Learn more about surgery.

Chemotherapy

Chemotherapy is the use of drugs to destroy cancer cells, usually by stopping the cancer cells’ ability to grow and divide. Chemotherapy for Wilms tumor is given by a pediatric oncologist.

Systemic chemotherapy is delivered through the bloodstream to reach cancer cells throughout the body. Chemotherapy for Wilms tumor is usually given through an intravenous (IV) tube placed into a vein using a needle. A chemotherapy regimen (schedule) usually consists of a specific number of cycles given over a set period of time. A patient may receive one drug at a time or combinations of different drugs at the same time. Common drugs for Wilms tumor with a favorable histology include dactinomycin (Cosmegen), doxorubicin (Adriamycin), and vincristine (Vincasar PFS, Oncovin). Other drugs being used to treat Wilms tumor include cyclophosphamide (Cytoxan, Neosar), etoposide (VePesid, Toposar), and irinotecan (Camptosar).

Chemotherapy may be given after surgery to eliminate any remaining cancer cells, called adjuvant chemotherapy. Sometimes, chemotherapy is given before surgery to shrink a tumor if it is too large to remove, or if it is growing into blood vessels or other organs that make it too risky to remove.

The side effects of chemotherapy depend on the individual and the 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 once treatment is finished.

Learn more about 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. Learn more about your child’s prescriptions by using searchable drug databases.

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 cancer 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 (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 destroy cancer cells that remain after surgery. Radiation therapy is generally part of the treatment plan for children with stage III or IV Wilms tumor with a favorable histology and for all children who have tumors with an anaplastic histology (see the Stages section for a description of these terms).

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

Learn more about radiation therapy.

Getting care for symptoms and side effects

Cancer and its treatment often cause side effects. In addition to treatment to slow, stop, or eliminate the cancer, an important part of cancer care is relieving a child’s symptoms and side effects. This approach is called palliative or supportive care, and it includes supporting your child with his or her physical, emotional, and social needs.

Palliative care can help a child at any stage of illness. Children often receive treatment for the cancer and treatment to ease side effects at the same time. In fact, patients who receive both often have less severe symptoms, better quality of life, and report they are more satisfied with treatment.

Palliative treatments vary widely and often include medication, nutritional changes, relaxation techniques, and other therapies. Your child may also receive palliative treatments similar to those meant to eliminate the cancer, such as chemotherapy, surgery, and radiation therapy. Talk with your child's doctor about the goals of each treatment in his/her treatment plan.

Before treatment begins, talk with your child’s health care team about the possible side effects of his/her specific treatment plan and supportive care options. And during and after treatment, be sure to tell your child’s doctor or another health care team member if your child is experiencing a problem so it is addressed as quickly as possible.

Learn more about palliative care.   

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 “no evidence of disease” or NED. 

A remission can be temporary or permanent. This uncertainty leads to many survivors and their families feeling worried or anxious that the cancer will come back. While many remissions are permanent, it’s important to talk with your child’s doctor about the possibility of your child’s cancer returning. Understanding the 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 cancer does return after the original treatment, it is called recurrent cancer. It may come back in the same place (called a local recurrence), nearby (regional recurrence), or in another place (distant recurrence).

When this occurs, a cycle of testing will begin again to learn as much as possible about the recurrence, including whether the tumor’s stage has changed. After testing is done, your child’s doctor will talk with you about treatment options. Often the treatment plan will include the therapies 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 also suggest clinical trials that are studying new ways to treat this type of recurrent cancer, including new medications.

The treatment plan for recurrent Wilms tumor depends on four factors:

  • Where in the body the cancer has returned
  • The type of treatment your child received for the original tumor
  • How long it has been since the original cancer was treated
  • Whether the new growth has a favorable or anaplastic histology

When cancer recurs, patients and their families often experience emotions such as disbelief or fear. Families are encouraged to talk with their health care team about these feelings and ask about support services to help them cope. Learn more about dealing with cancer recurrence.

If treatment fails

Although treatment is successful for the majority of children with 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 it may be difficult to discuss. However, it is important to have open and honest conversations with your child’s doctor and health care team to express your family’s feelings, preferences, and concerns. The health care team is there to help, and many team members have special skills, experience, and knowledge to support patients and their families.

Parents or guardians are encouraged to think about where their child would be most comfortable: at home, in a home-like setting elsewhere, in the hospital, or in a hospice environment. Hospice care is a type of palliative care for people who are expected to live less than six months. It is designed to provide the best possible quality of life for people who are near the end of life. Nursing care and special equipment can make staying at home a workable alternative for many families. Some children may be happier if they can arrange to 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.

The next section helps explain clinical trials, which are research studies. Use the menu on the side of your screen to select About Clinical Trials, or you can select another section, to continue reading this guide.

Wilms Tumor - Childhood - About Clinical Trials

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will learn more about clinical trials, which are the main way that new medical approaches are tested to see how well they work. To see other pages, use the menu on the side of your screen.

Doctors and scientists are always looking for better ways to treat children with Wilms tumor. To make scientific advances, doctors create research studies involving volunteers, called clinical trials.

Many clinical trials are focused on new treatments, evaluating whether a new treatment is safe, effective, and possibly better than the current (standard) treatment. 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 are often among the first to receive new treatments before they are widely available. However, there is no guarantee that the new treatment will be safe, effective, or better than a standard treatment.

There are also clinical trials that study new ways to ease symptoms and side effects during treatment and managing the late effects that may occur after treatment. Talk with your child’s doctor about clinical trials regarding side effects.

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, people are often willing to face the added uncertainty of a clinical trial in the hope of a better result. Other parents and children volunteer for clinical trials because they know that these studies are the only way to make progress in treating Wilms tumor. Even if your child does not benefit directly from the clinical trial, his or her participation may benefit future children with Wilms tumor.

Sometimes people have concerns that, by participating in a clinical trial, their child may receive no treatment by being given a placebo or a “sugar pill.” The use of placebos in cancer clinical trials is rare. If a placebo is used in a study, it is done with the full knowledge of the participants. Find out more about placebos in cancer clinical trials.

To join a clinical trial, parents and children must participate in a process known as informed consent. During informed consent, the doctor should list all of the child’s options so both parents and children understand how the new treatment differs from the standard treatment. The doctor must also list all of the risks of the new treatment, which may or may not be different from the risks of standard treatment. Finally, the doctor must 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.

For specific topics being studied for Wilms tumor, learn more in the Latest Research section. In particular, the Children’s Oncology Group conducts clinical trials for most types of childhood cancer, including Wilms tumor.

Patients who participate in a clinical trial may stop participating at any time for any personal or medical reason. 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 patients participating in a clinical trial talk with their child’s doctor and researchers about who will be providing their treatment and care during the clinical trial, after the clinical trial ends, and/or if the patient chooses to leave the clinical trial before it ends. 

Cancer.Net offers a lot of information about cancer clinical trials in other areas of the website, including a complete section on clinical trials and places to search for clinical trials for a specific type of cancer.

The next section helps explain the areas of research going on today about this type of tumor. Use the menu on the side of your screen to select Latest Research, or you can select another section, to continue reading this guide.

Wilms Tumor - Childhood - Latest Research

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will read about the scientific research being done now to learn more about this type of tumor and how to treat it. To see other pages, use the menu on the side of your screen.

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

Bilateral Wilms tumors. The Children’s Oncology Group is studying how to treat bilateral Wilms tumors 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 that indicates a possible disease. Doctors in the United Kingdom have found that children with Wilms tumor who have a recurrence all have active genes on one area of a specific chromosome, known as the 1q area. Once the specific genes are identified, it is possible that new tests may be developed to predict which children are likely to have a recurrence.

Tumor genetics. A new Wilms tumor gene has been identified on the X chromosome, called WTX, and it plays a role in normal kidney development. The WTX gene is not active in approximately one-third of children with Wilms tumor. Studies on the importance of this gene are ongoing.

New therapy combinations. Researchers are looking at whether patients with a favorable histology Wilms tumor who have metastases in the lungs need radiation therapy to the lungs if the lung tumors go away after six weeks of chemotherapy. Researchers are also using a different chemotherapy, as well as radiation therapy to the lungs, to treat lung tumors that do not go away after six weeks.

New treatment methods. Doctors are looking at the effect of using only surgery as a treatment for patients with a small stage I tumor. After surgery, the patients are watched closely for a recurrence. 

Supportive care. Clinical trials are underway to find better ways of reducing symptoms and side effects of current Wilms tumor treatments in order to improve children’s comfort and quality of life.

Looking for More About the Latest Research?

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

  • To find clinical trials specific to your diagnosis, talk with your child’s doctor or search online clinical trial databases now.
  • Visit ASCO’s CancerProgress.Net website to learn more about the historical pace of research for childhood cancer, called pediatric cancer on this website. Please note this link takes you to a separate ASCO website.

The next section addresses how to cope with the symptoms of the disease or the side effects of its treatment. Use the menu on the side of your screen to select Coping with Side Effects, or you can select another section, to continue reading this guide.

Wilms Tumor - Childhood - Coping with Side Effects

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will find out more about steps to take to help your child cope with physical, social, and emotional side effects. This page includes several links outside of this guide to other sections of this website. To see other pages, use the menu on the side of your screen.

Fear of treatment side effects is common after a diagnosis of cancer, but it may help to know that preventing and controlling side effects is a major focus of your child’s health care team. This is called palliative or supportive care, and it is an important part of the overall treatment plan, regardless of the stage of disease.

Common side effects from each treatment option for Wilms tumor are described in detail within the Treatment Options section. Learn more about the most common side effects of cancer and different treatments, along with ways to prevent or control them. Side effects depend on a variety of factors, including the tumor’s stage, the length and dosage of treatment(s), and your child’s overall health.

Before treatment begins, talk with your child’s doctor about possible side effects of each type of treatment your child will be receiving. Ask which side effects are most likely to happen, when they are likely to occur, and what can be done to prevent or relieve them. And, ask about the level of caregiving your child may need during treatment and recovery, as family members and friends often play an important role in the care of a person with Wilms tumor. Learn more about caregiving.

In addition to physical side effects, there may be emotional and social effects as well. Patients and their families are encouraged to share their feelings with a member of the health care team who can help with coping strategies, including concerns about managing the cost of your child’s cancer care

During and after treatment, be sure to tell a member of the health care team about the side effects your child experiences, even if you feel they are not serious. Sometimes, side effects can last beyond the treatment period, called a long-term side effect. A side effect that occurs months or years after treatment is called a late effect. Treatment of both types of effects is an important part of survivorship care. Learn more by reading the Late Effects of Treatment or the After Treatment section or talking with your child’s doctor.

The next section helps explain some late effects of cancer and cancer treatment. Use the menu on the side of your screen to select Late Effects of Treatment, or you can select another section, to continue reading this guide.

Wilms Tumor - Childhood - Late Effects of Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will find out more about side effects that can occur long after treatment for this type of tumor has finished. To see other pages, use the menu on the side of your screen.

Although many children with Wilms tumor are treated successfully, they often have an increased risk of developing other diseases or conditions later in life, as 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 Wilms tumor are monitored closely for possible long-term or late effects of the treatment. These may include:

Kidney failure. Because children treated for Wilms tumor usually have only one 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. Depending on the type of surgery, Wilms tumor patients are at risk at any time during their life for developing a bowel obstruction from scar tissue that causes abdominal pain and vomiting.

Heart problems. Children who have received doxorubicin have a higher risk of developing heart abnormalities that can occur even years after treatment has ended. Children treated with doxorubicin who also had radiation therapy to their lungs have an even higher risk of developing heart problems. An echocardiogram may be used to monitor the effects of doxorubicin on the heart.

Skeletal abnormalities. If radiation therapy was given, depending on the location and dose, scoliosis (curvature of the spine) and underdevelopment of the soft tissue may occur.

Secondary cancer. Wilms tumor survivors have a small risk of developing another type of cancer within 15 years after Wilms tumor was first diagnosed. The most important risk factors are whether treatment included radiation therapy and doxorubicin.

Pregnancy concerns. Women who have had abdominal radiation therapy for Wilms tumor should be considered high risk during pregnancy and monitored closely by their doctor. Chemotherapy alone does not increase the risk of miscarriage; however, women 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. Congenital (present at birth) abnormalities are also more common.

The next section helps explain medical tests and check-ups needed after finishing treatment. Use the menu on the side of your screen to select After Treatment, or you can select another section, to continue reading this guide.

Wilms Tumor - Childhood - After Treatment

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

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. To see other pages, use the menu on the side of your screen.

After treatment for Wilms tumor ends, talk with your child’s doctor about developing a follow-up care plan. This plan may include regular physical examinations and/or medical tests to monitor your child’s recovery for the coming months and years. All children treated for cancer, including Wilms tumor, should have life-long, follow-up care.

Follow-up care for Wilms tumor includes regular visits to the doctor for physical examinations, blood and urine tests, and imaging tests, such as CT scans, ultrasounds, and x-rays. At first, these visits and tests will be more frequent, such as every three months. Eventually, the time between checkups will increase until five years after treatment when your child will be scheduled for a follow-up visit once a year.

The longer the time since treatment ended, the less likely the tumor will return. At this point, monitoring for late effects becomes an important part of follow-up visits. During follow-up visits, patients will have blood tests to make sure that there have not been any changes in the functioning of their kidney. This is especially important for patients who have one kidney or had a partial nephrectomy.

Based on the type of treatment your child received, the doctor will determine what examinations and tests are needed to check for long-term side effects (see the Late Effects of Treatment section) and the possibility of secondary cancers. Your child’s doctor can recommend the necessary screening tests. Follow-up care should also address your child’s quality of life, including any developmental or emotional concerns. Learn more about childhood cancer survivorship.

You are encouraged to organize and keep a record of your child’s medical information. That way, as your child enters adulthood, he or she has a clear, written history of the diagnosis, the treatment given, and the doctor’s recommendations about the schedule for follow-up care. The doctor’s office can help you create this. This information will be valuable to doctors who care for your child during his or her lifetime. ASCO offers cancer treatment summary forms to help keep track of the treatment your child received and develop a survivorship care plan once treatment is completed.

Children who have had cancer can also enhance the quality of their future by following established guidelines for good health into and through adulthood, including not smoking, maintaining a healthy weight, eating a balanced diet, and participating in regular physical activity. Patients and their families should discuss with their doctors whether there are any limitations to their activities or sports involvement. Also, children who have been treated for cancer need to protect their skin from the sun by using sunblock and watch any suspicious skin changes.

Talk with the doctor about developing a plan that is best for your child’s needs. Learn more about the next steps to take in survivorship.

The next section offers a list of questions you may want to ask. Use the menu on the side of your screen to select Questions to Ask the Doctor, or you can select another section, to continue reading this guide.

Wilms Tumor - Childhood - Questions to Ask the Doctor

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

ON THIS PAGE: You will find some questions to ask your child's doctor or other members of your child's health care team, to help you and your child better understand his/her diagnosis, treatment plan, and overall care. To see other pages, use the menu on the side of your screen.

Talking often with the doctor 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, or download Cancer.Net’s free mobile app for an e-list and other interactive tools to manage your child’s care.

  • Can you explain my child’s pathology report (laboratory test results) and radiology reports (imaging test results) to me?
  • Can you give me copies of these reports so I can have a record of them?
  • What is the histology of the tumor? What does this mean?
  • What is the stage of the tumor? What does this mean?
  • What treatment options are available?
  • What clinical trials are open to my child? Where are they located, and how do I find out more about them?
  • 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?
  • Who will be part of my child’s health care team, and what does each member do?
  • Who will be coordinating my child’s overall treatment and follow-up care?
  • How long will my child receive treatment?
  • What are the possible side effects of each treatment option, both in the short term and the long term?
  • What do I need to 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?
  • How will this treatment affect my child’s daily life? Will he or she be able to go to school and perform his or her usual activities?
  • Can my child play sports and, if so, which ones? Are there any precautions we need to take when he or she participates in sports?
  • Could this treatment affect my child’s ability in the future to become pregnant or have children? If so, should we talk with a fertility specialist before cancer treatment begins?
  • If my child has children in the future, what is their risk of developing Wilms tumor?
  • What follow-up tests will my child need, and how often will he or she need them?
  • What is the chance that the tumor will come back after treatment?
  • If I’m worried about managing the costs related to my child’s medical care, who can help me with these concerns?
  • What support services are available to my child? To my family?
  • Whom should I call for questions or problems?

The next section offers some more resources that may be helpful to you and your family. Use the menu on the side of your screen to select Additional Resources, or you can select another section, to continue reading this guide.

Wilms Tumor - Childhood - Additional Information Resources

This section has been reviewed and approved by the Cancer.Net Editorial Board, 06/2014

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. To go back and review other pages, use the menu on the side of your screen.

Cancer.Net includes many other sections about the medical and emotional aspects of cancer, both 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 sections that may get you started in exploring the rest of Cancer.Net:

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