What is a DIPG brain tumour


Expert / 3 July, 2024 / Ellie Thompson

My Baba’s Editor, Ellie Thompson, lately misplaced her lovely four-year-old boy, Billy, to a DIPG brain tumour. Ellie requested the consultants at The Brain Tumour Charity to stipulate precisely what a DIPG is (extra lately referred to as DMG) to assist elevate consciousness of this killer paediatric most cancers.

What are brain tumours and what number of sorts are there?

Every 12 months within the UK, round 12,700 persons are identified with a major brain or central nervous system tumour. There are round greater than a hundred various kinds of brain tumours, and they’re differentiated in keeping with a classification developed by the World Health Organisation (WHO). The present classification was printed in 2021, nevertheless it is regularly up to date.

What are low-grade and high-grade brain tumours?

WHO classifies brain tumors as both low-grade or high-grade, relying on their conduct. The extra regular the cells, the decrease the grade. Grades 1 and a pair of are slow-growing and fewer more likely to unfold to different elements of the brain. These account for round 53% of brain tumor diagnoses every year. High grades (3 and 4) are aggressive and fast-growing, accounting for round 47% of instances.

Within that classification, the names for brain tumours are decided by their location within the brain and the names of the cells they develop in. If a particular genetic mutation is recognized, these can additional classify how a brain tumour might reply to remedy (the place that’s identified).

NHS info on the illness is right here: https://www.nhs.uk/conditions/brain-tumours/

What is a DIPG?

A DIPG (diffuse intrinsic pontine glioma) is now referred to as a diffuse midline glioma or DMG and it is a high-grade brain tumour.

To clarify every of these phrases, diffuse signifies that the tumour spreads in order that most cancers cells combine with wholesome cells. Intrinsic merely means “in,” referring to the purpose or origin.

The tumour varieties within the glial cells, so it is referred to as a glioma. Glial cells are discovered all through the brain. They make up the white matter that surrounds and helps the neurons, that are cells that carry messages within the brain.

Pontine refers back to the a part of the brain the place the tumour develops: the pons or midline space. This a part of the brainstem is liable for relaying indicators from the cerebrum to the cerebellum that assist with very important features like sleeping, respiration, bladder management, posture, listening to, facial and eye actions.

How prevalent are diffuse midline gliomas?

Brain tumours are uncommon*, however tumours affecting the brain or spinal twine are the second most typical most cancers in kids, in keeping with Cancer Research UK.

There are round 12,700 new instances of brain tumours identified yearly within the UK. Children identified with a diffuse midline glioma make up between 20 to 30 of these instances.

How to identify a DIPG

When cells develop uncontrollably in an space of the brain, they type a mass that places stress on nerves in these areas. While signs can range, this will have an effect on any of the features for which the nerves in that a part of the brain are accountable.

Therefore, a few of the most typical signs a baby with DMG/DIPG might expertise embody:

  • issues with strolling, coordination or stability
  • weak point within the legs and arms
  • issue controlling facial expressions or one aspect of the face showing completely different from the opposite
  • speech difficulties
  • issues with swallowing and chewing
  • double imaginative and prescient or issue controlling eye motion
  • bladder issues

As the tumour grows, it could block drainage of the cerebrospinal fluid that surrounds and nourishes the brain. This may cause a build-up of fluid inside the cranium, often called hydrocephalus, and the stress from this will trigger:

  • complications (particularly within the morning)
  • nausea
  • fatigue

But there could also be different much less frequent signs. You can use this symptom tracker, which has sections related to infants and kids, if you’re in any respect nervous: https://bettersafethantumour.com/

Treatment of a DIPG or DMG

Following a brain tumour analysis, a affected person’s Multi-Disciplinary Team will decide the most effective course of remedy for them. This might contain both surgical procedure, radiotherapy and chemotherapy, or a mixture of all three.

But tragically, within the case of DMG or DIPG, there are at the moment no efficient therapies. That’s as a result of the placement of the tumour means surgical procedure is not an possibility as a result of eradicating it might additionally harm the elements of the brain that management very important features like respiration.

Radiotherapy for DIPG

Chemotherapy has been proven to be ineffective and so radiotherapy is the present customary of remedy with the purpose of shrinking the tumour.

Do steroids cut back or management the signs of a brain tumour?

Steroids may additionally be prescribed to scale back swelling within the brain brought on by the tumour and/or the negative effects of radiotherapy. Alternatively, a shunt could also be fitted to empty the fluid.

This means there is a very slim probability (lower than 2%) of a baby dwelling with the illness for 5 years or extra. The Brain Tumour Charity has extra info here.

What is radiotherapy?

Radiotherapy is, successfully, excessive dose x-rays which may gradual tumour development by depositing vitality inside the tumour, damaging the cells’ DNA. If these cells can not restore the harm, the tumour cells die after they attempt to divide.

Radiotherapy must be precisely focused on the tumour and to do that a specifically moulded masks for the face and head is created. The affected person then must hold very nonetheless or be anaesthetised. This might be difficult and scary for younger kids so a play therapist may match with them to make this much less daunting.

While this sort of tumour might initially reply to radiotherapy, the remedy has its dangers and negative effects, and the tumour is more likely to develop again. There’s extra info on radiotherapy for treating kids here.

Causes of DIPG/DMG

Scientists don’t but know what causes brain tumours. They are indiscriminate and might have an effect on anybody at any age. There is no analysis to point that something throughout being pregnant or early infancy causes brain tumours or DMG to develop.

This short video by Cancer Research UK explains extra about how most cancers begins:

Research into DIPG brain tumours

DMG brain tumours urgently want investigating in order that a breakthrough in remedy is lastly discovered. This takes funding in analysis initiatives in addition to within the infrastructure and expert workers wanted for medical trials, and far more.

The discovery of the chemotherapy drug temozolomide was 20 years in the past, and whereas a treatment can not wait any longer, it’s a story of hope.

The most promising analysis initiatives embody these associated to genetic sequencing to establish particular mutations in tumours which current medication could possibly goal.

  1. ONC201 Trials: The ACTION examine, a double-blind, placebo-controlled section 3 trial, is investigating whether or not the remedy ONC201 could possibly be an efficient first-line remedy for sufferers with H3K27M-mutated DMG.
  2. The BIOMEDE trial consists of finishing up a biopsy of a brain tumour. By doing this, the molecular traits of the tumour might be recognized, and completely different therapies assigned as they’re developed:
  3. THE TANGENTIAL examine at University College London is learning experimental fashions and molecular knowledge from brain tumour cells with the purpose of higher understanding what makes cells senescent (unable to multiply). By filling this information hole, it’s hope researchers can establish new medication and remedy strategies, and enhance the effectiveness of current therapies.

Support for households of kids with brain tumours

The Brain Tumour Charity

Their devoted Children and Families Service goals to scale back isolation and for youngsters and their households by giving them the assistance, understanding and help they want following a brain tumour analysis.

Abbie’s Army

Raises consciousness and funding for analysis into DIPG analysis to attempt to overturn its ‘terminal’ prognosis. It additionally offers assets, sensible recommendation and help for different parents within the UK, whose baby obtain this analysis.

Tom’s Trust

Provides psychological help for youngsters with brain tumours and their households.

Eva’s Angels

Provides quick breaks in Kent for households affected by childhood most cancers.

Joss Searchlight

Is placing collectively a workforce of help employees to assist households affected by brain tumours.

The Unbeatable Eva Foundation

Aims to supply reward packing containers and experiences.

Brain Tumour Support and brainstrust additionally present help companies and knowledge, whereas the Tessa Jowell Brain Cancer Mission lately awarded six NHS Trusts centre of excellence standing after they met strict standards for treating paediatric brain tumours.


*Brain tumours are classed as a uncommon illness in comparison with different situations, as these figures present:

Cancer Research UK: Between 2017 and 2019 there have been, on common, 12,746 new instances of brain tumour every year within the UK.

During the identical time interval there have been 56,822 new instances of breast most cancers and 52,254 instances of prostate most cancers instances.

Article by The Brain Tumour Charity 

Follow the journey of Billy the Brave on Facebook and Instagram. Billy is the son of Ellie Thompson, the editor at My Baba. He was identified with a DIPG on seventh November 2023. Billy sadly handed away on thirty first March 2024.


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