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Prognosis for diffuse midline gliomas (previously called DIPG)

Your doctor cannot be absolutely certain about what will happen to your child following a diagnosis of a diffuse midline gliomas (previously called DIPG). They can give you an estimate, based on the tumour type and current situation, but they may not be able to predict other factors, such as how well your child might respond to treatment.

Prognosis is often an ongoing process, revised at different stages in your child's journey.

Receiving information about a brain tumour prognosis

Different people approach their prognosis in different ways.

  • Some do not want to know, because they are afraid of what they might hear and how it may affect them
  • Some just need some time to cope with their diagnosis before asking about their prognosis
  • Others may want to know from the beginning, using their prognosis to plan ahead

There is no right or wrong answer as to whether or when to receive such information. It is entirely up to you whether or when you want to speak to your doctor about your child's prognosis.

Brain tumour survival

The survival rate given below is not meant to represent how long a person will live past those intervals. For example, someone who has survived for two years after diagnosis may live as long as any other healthy person, depending on their circumstances.

It is important to remember that statistics and averages cannot tell you what will happen to you specifically. You can find a general overview of prognosis for diffuse midline gliomas below.

Diffuse midline glioma prognosis

  • The average (median) overall survival for people with diffuse midline glioma (DIPG) is less than 1 year – generally ranging from 8-11 months.
  • About 10% of people survive at least 2 years after diagnosis.
  • About 2% of people survive at least 5 years after diagnosis.

Some people live longer, but there appears to be no common reason for this. However, research has shown some factors that seem to suggest patients may survive longer than 2 years. These include:

  • Being younger than 3 years, or older than 10 years
  • Having fewer symptoms at diagnosis
  • Having smaller tumours on the MRI at diagnosis, with less evidence of it spreading outside the pons area of the brain
  • Having an HIST1H3B mutation/not having the H3 K27M mutation (people with the H3 K27M mutation don’t respond well to radiotherapy, and tend to relapse sooner than people with the HIST1H3B mutation).

Get your free brain tumour information pack

Our Brain Tumour Information Pack has been designed to help you cope after diagnosis and support you during this difficult time. It can help to guide you through the healthcare system, answer your questions, and reassure you that you're not alone so that you feel confident when discussing treatment and care options with your medical team.

Unfortunately, we're currently unable to send Information Packs by post. All the information contained in the pack can be found in the email you'll receive after completing this form.

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