Diagnosis and Treatment
How is DIPG diagnosed?
Typically, DIPG tumors are diagnosed by magnetic resonance imaging (MRI) and based upon your child's symptoms. In some cases, your child's doctor may recommend a biopsy to learn more about the tumor, but this is not always performed.
MRI
An MRI scan produces detailed images of the brain and varies in length of time required, usually between 30 and 60 minutes. It can show whether it’s spread beyond the pons. DIPG has a distinct appearance on an MRI. An experienced radiologist can distinguish it from other types of brainstem tumors.
Biopsy
You may be encouraged to consider a biopsy. This will allow the medical team to understand the biology of your child’s tumor. It will provide important information to help determine the best treatment options. Biopsies are encouraged, as they are prerequisites to some trial entry, and they provide important knowledge regarding mutation types to create customizable treatment plans. It is also highly encouraged to have a biopsy for DIPG/DMG conducted at a center of excellence with surgeons who perform a high volume of these procedures.
Treatment
Current treatments for DIPG may extend your child’s life for a short time, but they can’t get rid of the cancer completely. The brainstem is made of neural tissue that controls many vital functions of your child’s body. Removing the tumor would damage these essential neural structures therefore surgery is rarely an option.
Radiation
The only approved standard of care for DIPG/DMG is radiation therapy. Most patients are treated with radiation therapy (high-energy x-rays which are used to kill or slow down tumor cells); although radiation sadly cannot cure DIPG, it has been shown to increase survival and improve symptoms temporarily in most patients. Radiation should begin as soon as possible after diagnosis in order to stall the progression of the tumor.
Chemotherapy
Chemotherapy alone has not been shown to be effective in treating patients with DIPG. There are specific challenges with DIPG/DMG that have inhibited success. Researchers are optimistic that by discovering the right combination of drugs, dosages, and new delivery methods, they will develop effective treatments for DIPG/DMG in the future, providing more hope for families than ever before.
Corticosteroids
Your healthcare provider may prescribe drugs that reduce inflammation, called corticosteroids, before or after your child’s radiation therapy. Corticosteroids can reduce swelling in the brain that’s causing your child’s symptoms. They can also reduce inflammation following radiation.
Unfortunately, corticosteroids also cause unpleasant side effects, including hunger, weight gain, mood swings, etc. Weigh the potential benefits of corticosteroids against the risks with your provider.
Clinical Trials
A clinical trial is a study that researches the safety and effectiveness of new treatments. Researchers have identified characteristics of DIPG cancer cells that can inform new therapies — including molecular targeted therapy and immunotherapy — which may be available through a clinical trial.
Palliative Care
Enrolling in palliative care services does NOT mean giving up. Palliative care professionals can work with you and your care team to ensure that your child’s care plan prioritizes their quality of life. Palliative care can provide medical, emotional and spiritual support to help you, your child, and family. Palliative care is NOT Hospice and complements the care you receive from the providers in charge of your care plan.
For more information, visit ninr.nih.gov for Palliative Care for Children.
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