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What is a diffuse midline glioma?

Previously called DIPGs, diffuse midline gliomas are the second most common type of primary high grade brain tumour in children.

If your child or a child you know has recently been diagnosed with a diffuse midline glioma, you may be worried about what this means. This is a natural way to feel. Our Support and Information team can help answer any questions you may have or provide a listening ear if you need one.

What is a diffuse midline glioma?

Diffuse midline gliomas are grade 4 brain tumours that, until recently, were called diffuse intrinsic pontine gliomas (DIPGs). They’re more common in children, but they can occur in adults. They’re:

  • fast growing
  • likely to spread
  • sometimes referred to as malignant or cancerous
  • difficult to remove surgically because they are diffuse, which means they don’t have well-defined borders
  • a type of glioma, which is a brain tumour that grows from a glial cell.

Diffuse midline gliomas (previously called DIPG brain tumours) grow in the areas of the brain that are found in the midline, this is the natural centre line of the brain between its two halves. They most commonly grow in the pons in region of the brain stem, the thalamus and the spinal cord.

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What are the symptoms of a diffuse midline glioma?

The symptoms of a diffuse midline glioma (previously called diffuse intrinsic pontine glioma) can vary, as the areas where they usually develop are responsible for a range of different body functions.

The most common symptoms your child may experience include:

  • problems with walking, coordination or balance
  • weakness in the arms and legs
  • difficulty controlling facial expressions or one side of the face appearing different from the other
  • speech difficulties
  • problems with swallowing and chewing
  • double vision or difficulty controlling eye movement.

Growth of the tumour might also block the drainage of the cerebrospinal fluid that surrounds and nourishes the brain. This can cause a build-up of pressure in the head, known as hydrocephalus, and can cause:

  • headaches (especially in the morning)
  • nausea
  • fatigue.

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How are diffuse midline gliomas treated?

Radiotherapy is the current standard of treatment for children with a diffuse midline glioma (previously known as DIPG). Steroids may also be used to help reduce some of the pressure caused by the tumour and radiation treatment.

Unfortunately, surgery to remove the tumour is usually not possible because of:

  • the difficulty of removing a diffuse tumour without damaging surrounding healthy tissue
  • the dangers of operating on areas of the brain that control things such as breathing and heart rate.

Chemotherapy drugs that are used to treat high grade gliomas in other parts of the brain and in adults, have unfortunately not been effective in treating childhood diffuse midline gliomas.

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What causes diffuse midline gliomas?

The cause of brain tumours, including diffuse midline gliomas, is not yet known. This can be one of the most difficult things to accept as a parent as it can leave you feeling helpless.

Brain tumours are nobody’s fault though. There is no research that shows that anything you may have done during pregnancy or in your child’s early infancy could have caused your child’s brain tumour.

At the moment, there’s ongoing research into diffuse midline gliomas, including discovering its causes, which could help develop new treatments in the future.

How long can somebody live with a diffuse midline glioma?

This will be different for everybody who is diagnosed with a diffuse midline glioma (formerly known as diffuse intrinsic pontine glioma). It depends on many factors, including the specific details about the tumour, how they react to treatment and their general health.

Diffuse midline glioma prognosis

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If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
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