Wilms Tumor - Childhood

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 s ources 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.

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.

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.

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 many 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:

• 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.
  
  
• 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 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.
  
  
• 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 uses magnetic fields, not x-rays, to produce detailed images of the body. 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 uses a radioactive tracer to look at the inside of the bones. 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.
  
  
• Surgery or biopsy. For children with a mass in the kidney that appears to be a stage I or stage 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 removal of a small amount of tissue for examination under a microscope.
  
  A pathologist then 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.

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 and occupational therapists, social workers, and counselors. Special activities and programs to help your child and family cope may also be available.

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 talks 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 particularly important for 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.

• Surgery

• Chemotherapy

• Radiation therapy

• Physical, emotional, and social effects of cancer

• Remission and the chance of recurrence

• If treatment does not work

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, and social 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 care or 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 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 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 similar to those meant to get rid of the cancer, such as chemotherapy, surgery, or radiation therapy.

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 care options. Many patients also benefit from talking with a social worker and participating in support groups. Ask your doctor about these resources, too.

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 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 again 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 cancer 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 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.

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 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 may be used to identify patients who are at an increased risk for recurrence.

• 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 Wilms tumor with a favorable histology that has spread to the lungs should be treated with radiation therapy if the lung tumors go away after 6 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 6 weeks.

• 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 care/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:

• To find clinical trials specific to your diagnosis, talk with your child’s doctor or search online clinical trial databases .
  
  
• Visit the website of Conquer Cancer, the ASCO Foundation , to find out how to help support cancer research. Please note that this link takes you to a different ASCO website.

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.

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.

• 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 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, radiation therapy to treat a Wilms tumor that has spread to the lungs can cause an increased risk of female breast cancer.

• Pregnancy concerns. If the person previously received abdominal radiation therapy to treat a Wilms tumor, any future pregnancy should be considered "high risk" and be closely monitored by doctors. Chemotherapy alone does not increase the risk of a miscarriage. However, receiving radiation therapy aimed at the side of the body between the rib and hip, depending on the dose, means there is a higher risk of 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. Birth defects are also more common.

• Fertility concerns. Young girls who received radiation to their entire abdomen for a Wilms tumor may experience fertility problems when 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.

• Dental problems. Depending on their age when they were diagnosed and treated for a Wilms tumor, a child 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.

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.