Every case is unique and will present different challenges. In general, there are four key areas in which you will need to make some decisions after initial diagnosis. Here are some suggested questions you may want to consider:
Medical Team
Does your medical team have extensive experience with DIPG and DMG? If so, how many DIPG patients do they see every year?
Does the medical institution have at least one pediatric neuro-oncologist, along with a neurosurgeon, neuroradiologist, and neuropathologist who are trained to correctly diagnose and treat DIPG and DMG?
Should we get a second opinion and, if so, from whom?
Biopsy
Does the neurosurgeon have extensive experience performing stereotactic biopsies for DIPG and DMG patients? If so, how many are conducted every year?
Is there a plan to perform extensive molecular testing on the biopsy tissue as well?
Are there any special considerations in performing this biopsy that could affect enrollment in a clinical trial, if I am interested?
Would a biopsy of the tumor help identify the best treatment for my child?
Is there a way for the results of the biopsy to be shared with others for the benefit of DIPG and DMG research?
Steroids
Is there a plan in place for my child to eventually stop steroid treatment?
Do you have suggestions for alternatives to help decrease inflammation other than steroids?
What side effects can I expect from steroid treatment?
How can steroid side effects be managed?
Can steroids affect enrollment into clinical trials?
Radiation
What side effects may occur from the radiation, and how are they managed?
Will my child need to be put under sedation before each radiation session?
Is it possible to try radiation without sedation first?
Will my child be able to continue his or her normal activities?
What can we expect in the weeks following radiation therapy?
