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Hepatoblastoma in Children

What is hepatoblastoma in children?

Hepatoblastoma is a very rare cancer. It’s a tumor that starts in the liver. It usually affects children less than 3 to 4 years of age. It usually doesn’t spread (metastasize) to other areas of the body.

What causes hepatoblastoma in a child?

The cancer is caused by a change in a gene. The reason why this happens is not known.

Which children are at risk for hepatoblastoma?

Some genetic health conditions increase a child's risk. These include:

  • Beckwith-Wiedemann syndrome
  • Familial adenomatous polyposis
  • Glycogen storage diseases
  • Aicardi syndrome

Babies born at a very low birth weight also seem to be at higher risk.

What are the symptoms of hepatoblastoma in a child?

Symptoms vary depending on the size of the tumor and whether it has spread. Symptoms can occur a bit differently in each child. They can include:

  • Lump (mass) in the belly (abdomen)
  • A swollen abdomen
  • Pain in the abdomen
  • Loss of appetite
  • Weight loss
  • Feeling tired
  • Nausea and vomiting
  • Yellow color to the skin or whites of the eyes (jaundice)
  • Fever
  • Itchy skin
  • Enlarged veins on the belly

The symptoms of hepatoblastoma can be like other health conditions. Make sure your child sees a healthcare provider for a diagnosis.

How is hepatoblastoma diagnosed in a child?

You may take your child to the healthcare provider because of a lump, swelling, or pain in the belly abdomen, or other symptoms. The healthcare provider will ask about your child's symptoms. He or she will examine your child, focusing on the abdomen. Your child may need to see a specialist in diagnosing and treating cancer in children (pediatric oncologist). Your child may have tests such as:

  • Blood tests. These tests look for signs of illness. They check for blood clotting problems, liver and kidney function, tumor markers, gene problems, and more.
  • Ultrasound (US) exam. Sound waves are used to create images. This may be one of the first tests used to look at the liver.
  • CT scan. A series of X-rays and a computer are used to make images of the body. This may be done to look at blood vessels in the liver.
  • MRI. Large magnets, radio waves, and a computer are used to make detailed images of the inside of the body. This may also be done to look at blood vessels in the liver.
  • Tumor biopsy. A sample of the tumor is taken and checked with a microscope for cancer cells. A biopsy is needed to diagnose hepatoblastoma. The biopsy may be done with a needle or with surgery.

After a diagnosis of hepatoblastoma, your child will have other tests. These help your child's healthcare providers learn more about the cancer. They will show how much and how far the cancer has spread (metastasized) in your child's body. Two groupings are then assigned:

  • The PRETEXT grouping is assigned at the time of diagnosis. It describes the tumor before treatment starts.
  • The POSTTEXT grouping describes the tumor after treatment.

Both groupings can have a value of 1 to 4. They are written as Roman numerals I, II, III, and IV. The higher the number, the more parts (lobes) of the liver involved and the more advanced the cancer is.

These groupings are important to know when deciding how to treat the cancer. Be sure to ask your healthcare provider to explain your child's PRETEXT and POSTTEXT groupings in a way you can understand.

How is hepatoblastoma treated in a child?

If your child has been diagnosed with hepatoblastoma, you may want your child to see another oncologist. This means to get a second opinion. Your insurance company may require a second opinion.

Treatment will depend on the stage and other factors. The cancer can be treated with any of the below:

  • Surgery. This may be done to take a sample of the tumor for diagnosis. And it may be done to remove as much of the tumor as possible (resection). Surgery may also be done to remove tumors in other parts of the body, such as in the lungs.
  • Chemotherapy. These are medicines that kill cancer cells. They may be given before or after surgery. They are delivered into a vein (IV) or by shot (injection), or by mouth (oral). The medicines may also be delivered to the liver. This is done with a tube (catheter) into the liver's main artery. This is called chemoembolization of hepatic artery. The medicine is mixed with a substance that blocks the flow of blood to the tumor. This causes problems with the tumor's growth.
  • Liver transplant. If a tumor can’t be removed, the liver may be removed and replaced with a liver from a donor.
  • Radiation therapy. These are high-energy X-rays or other types of radiation. Radiation is used to kill cancer cells or stop them from growing. This is being studied for use in treating hepatoblastoma.
  • Clinical trials. Ask your child's healthcare provider if there are any treatments being tested that may work well for your child.
  • Supportive care. Treatment can cause side effects. Medicines and other treatments can be used for pain, fever, infection, and nausea and vomiting.

With any cancer, how well a child is expected to recover (prognosis) varies. Keep in mind:

  • Getting medical treatment right away is important for the best prognosis. Cancer that has spread is harder to treat.
  • Ongoing follow-up care during and after treatment is needed.
  • New treatments are being tested to improve outcome and to lessen side effects.

What are possible complications of hepatoblastoma in a child?

A child may have complications from the tumor or from treatment, such as:

  • Infections and bleeding from surgery
  • Increased infections, bruising and bleeding, vomiting, diarrhea, hair loss, and tiredness with some chemotherapy medicines
  • Problems with growth and development
  • Heart, kidney, or lung problems
  • Problems with liver function
  • Spreading cancer (metastasis)
  • Cancer that grows back
  • Growth of new cancers
  • Rejection of the new liver if a liver transplant is needed
  • Problems with anti-rejection medicines

How can I help my child live with hepatoblastoma?

A child with a hepatoblastoma needs ongoing care. Your child will be seen by oncologists and other healthcare providers to treat any late effects of treatment and to watch for signs or symptoms of the tumor returning. Your child will be checked with imaging tests and other tests. And your child may see other healthcare providers for problems from the tumor or from treatment.

You can help your child manage his or her treatment in many ways. For example:

  • Your child may have trouble eating. A dietitian may be able to help.
  • Your child may be very tired. He or she will need to balance rest and activity. Encourage your child to get some exercise. This is good for overall health. And it may help to lessen tiredness.
  • Get emotional support for your child. Find a counselor or child support group can help.
  • Make sure your child attends all follow-up appointments.

When should I call my child’s healthcare provider?

Call the healthcare provider if your child has:

  • Fever
  • Symptoms that get worse
  • New symptoms
  • Side effects from treatment

Key points about hepatoblastoma in children

  • Hepatoblastoma is a very rare cancerous (malignant) tumor that starts in the liver. 
  • Symptoms include a lump (mass), swelling, or pain in the belly (abdomen).
  • Diagnosis is done with blood tests, imaging, and biopsy.
  • It may be treated with surgery, chemotherapy, and other methods.
  • Follow-up care is needed to watch for complications and cancer that grows back.

Next steps

Tips to help you get the most from a visit to your child’s healthcare provider:

  • Know the reason for the visit and what you want to happen.
  • Before your visit, write down questions you want answered.
  • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you for your child.
  • Know why a new medicine or treatment is prescribed and how it will help your child. Also know what the side effects are.
  • Ask if your child’s condition can be treated in other ways.
  • Know why a test or procedure is recommended and what the results could mean.
  • Know what to expect if your child does not take the medicine or have the test or procedure.
  • If your child has a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your child’s provider after office hours. This is important if your child becomes ill and you have questions or need advice.
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