In the days following my brain surgery, I began to suspect that I may be missing some basic facts about my case. My first inkling was the term "neuro-oncologist," which kept getting thrown around as if the need for such a specialist were obvious. Especially worrisome was how the possessive "your" kept getting prepended: your neuro-oncologist. Wait, why did I need a neuro-oncologist?
While I was recovering in the ICU shortly after surgery, Dr. Assistant Surgeon had told my family the good news: they had "got it all." Everyone understood this to mean that the tumor, and my problems with brain cancer going forward, were history.
I'm no medical doctor, but it's not too hard to guess that a neuro-oncologist specializes in cancers of the brain and spinal chord. All well and good, but what did neuro-oncology have to do with me? And why was this person being referred to as my neuro-oncolologist? I'd just had a super-maximal resection. The lemon-sized demon so intent on devouring my right parietal lobe was history. It had been sucked out the airlock like the creature in Alien. Right?
But more than the problem of having been paired with a specialist I didn't seem to need was the fact that neither my family nor I had a name for what I was facing. Doctors don't just throw the word "tumor" or "cancer" around and leave it at that. There are hundreds of kinds of cancer, and there's a specific name for each one. Cancers are classified by, for example, the organ they're found in, or the type of cell they derive from. These terms are given to patients. But for some reason, I seem to have been told nothing.
Up to this point, all my family and I remember having been told was that I had a brain tumor and that it could be cancerous. But what kind of tumor was it? In other words, when was somebody going to attach a name to this thing so I could finally figure out what I was up against?
Medical professionals no doubt have issues with Dr. Google. I get it. They've trained for years at their jobs, whereas Joe Patient has not. A little knowledge can be a dangerous thing. Give a patient the name of a condition that's just a differential diagnoses, and bad things can happen.
Having worked as a medicinal chemist for many years as part of a chemistry/biology team — in neuroscience no less, I also get that biological data are messy. The error bars are enormous when working with anything as complex as a living system.
Regardless, it seemed reasonable that somebody on my multi-disciplinary surgery team had a pretty good idea of what was going on. I just wasn't being told.
I was not happy about this. Avoiding full disclosure of information to a patient who wants it seems wrong. I'm not sure how well I articulated my desire to get answers but it was clear that somewhere the lines of communication had broken down.
By the evening of March 31, I'd had enough Mystery Theater. It was time to get some answers. Late that night I asked my wife to bring the password to my MyChart account. MyChart is a software platform used by many hospitals in the US. One of its most useful features is to grant patients direct access to their medical records, including raw images, test results, technical impressions, and reports. I wanted my password so I could log into MyChart, and hopefully get a name for my condition.
It didn't take long before I had an answer. Tucked away in one of the surgery team's routine bits of documentation was the fact that I was suspected of having something called a "high grade glioma," more commonly referred to as glioblastoma. Wikipedia offers this alarming description:
Glioblastoma, previously known as glioblastoma multiforme (GBM), is the most aggressive and most common type of cancer that originates in the brain, and has very poor prognosis for survival. …
Yet another punch to the face. Was this really happening?
I concluded that my very survival could depend on finally getting someone to tell me what the hell was going on. Not confident in my ability to remain calm or comprehend everything, I asked my wife to be present during the morning "rounds" made by the surgery team. I planned on confronting the good doctors with what I knew and asking for an explanation. Unlike previous rounds where I'd been woken up from sleep and barely able to formulate a sentence, I would be ready with a list of written questions.
I especially wanted the team to recap what they understood had happened using all of the images that had been collected, from my admission to the ER onward. My suspicions were confirmed, and one more crucial fact emerged: what makes glioblastoma so insidious is its ability to infiltrate the brain. What you see on MRI is just the tip of a deadly iceberg.
Several weeks later, I'd learn that the surgery report noted a conversation, just prior to the operation, which I still have no memory of:
… I [Dr. Staff Surgeon] discussed the risks and benefits of surgery with the patient [me]. These included… the possibility that this was a high-grade glioma, which ultimately is a fatal diagnosis. All his questions were answered to his satisfaction.
I was going to need a neuro-oncologist (or three) because surgery was just the beginning. With or without a neuro-oncologist, my chances of long-term survival were slim at best. You don't "beat" glioblastoma the way you "beat" some cancers. You die from glioblastoma.