Be prepared for the nihilism that still exists with many physicians who see a gbm diagnosis as a death sentence. They will quote you the bleak statistics..

Avoid these people at all costs…get a second.. or third..or fourth opinion.

The internet is full of information on clinical trials…just because your physician gives up on you, does not mean you must do so…

If you are not at a treatment center of excellence that uses a team approach, you may have to coordinate communications between your physicians: neurosurgeon, neurologist, oncologist…etc.

This may seem like an unfair burden while walking the path of treatment. Champion your cause, and accept this new roll as medical coordinator. Get on a first name basis with office managers, nurses, radiation & lab techs, etc. These are people you are going to have to interact with for awhile, remember to be as pleasant as you can, as you may need them to go to the well for you sometime when you are in a pinch.

Educate yourself about brain tumors, treatments, seizure meds, etc. Communication is sometimes a burden, and it helps when you are on the same page as your physician(s).