BRAIN TUMOR DIAGNOSIS
T
he words from the doctor sink in . . “brain tumor.” Inner thoughts both chaotic and reassuring rise up in response: “At last there is an answer for my symptoms,” “We have a name for what’s been bothering me,” “Now what?” “I don’t even know where to begin with asking questions,” “Am I going to die from this?” “My life is changed entirely,” “Who will I trust to make sure I’m treated in the best way?”
And so it begins, the immersion into a new society, one of doctors, hospitals, tests, prognoses, plans, options, decisions. That brain tumor diagnosis comes with a specific name – not just a “brain tumor” but an astrocytoma, meningioma, adenoma, chordoma, glioblastoma, craniopharyngioma, or other name ending with “oma” (originating from the Greek for “growth,” “swelling,” or “tumor”). Your doctor provides information about the tumor, you read and learn about the tumor and how it will affect your health and your life, you research doctors and hospitals, and you move forward. During one of your followup visits, you are informed that, after tumor biopsy or removal, after imaging, after pathology review, the tumor is not what was diagnosed initially. A new set of questions arises: “Is this good or bad?” “What do I do now?” You need to rely on people who know about brain tumors that, according to the National Brain Tumor Society, number over 100 different types and subtypes. You go where the experts are. “It’s essential to have an accurate diagnosis so that the patient can be treated properly,” says Dr. Paul Gardner of the UPMC Center for Skull Base Surgery. “Different tumors require radically different treatments and that is just one reason patients should seek out a Center of Excellence, where expert physicians across disciplines care for people with a certain disease. With brain or skull base tumors, there can be a lot of subtle overlap in appearance and location, and only with experience and specialized imaging and histopathologic testing can we decide on proper treatment. Surgical expertise is critical to know when and how much to remove, which can be radically different for every patient and every tumor. Understanding this is key to ensure the best outcome.” Says Dr. Carl Snyderman, “The patient quality-of-life studies we are doing reflect our ultimate mission. Will someone be free of symptoms, first and foremost? Will the person have the absolute best long-term outcome? Beyond that, can the person continue to attend school, earn a living, go for hikes, take care of their children, and participate in all aspects of living that entail a full life for them? Patients come to us from across the United States and throughout the world, often after having consulted with many physicians. We see patients who come to us with no diagnosis or incorrect diagnoses. We take a fresh look at the person and, with the benefit of our own experiences plus the expertise of different specialists at UPMC devoted to brain tumors, we can have the patient worked up thoroughly and give them a definitive answer.”
The term, “Center of Excellence (CoE),” has its origins in manufacturing, aligned with the purpose of having experienced workers provide and pass along proven best practices in their areas of expertise. A concept that works well, for example, in routinely manufacturing cars with safe, reliable brakes was intriguing to those in medicine and healthcare. Physicians envisioned the CoE concept as a means to apply their expertise to ensuring patients get, reliably, the best possible health outcomes. Adapting Center of Excellence concepts to patient care means that specialty practitioners such as neurosurgeons are given opportunity to work closely with their counterparts in radiology, pathology, oncology, and other specialties focused on brain tumor research and treatment. Additionally, this concentrates care with high-volume surgeons, a factor that has been repeatedly shown to improve patient outcomes. Continued
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