Being diagnosed with terminal brain cancer is bad enough without conflicting medical opinions. But in mid-April this is exactly where things stood for me. Dr. Neuro-Oncologist and Dr. Staff Surgeon, two members of my treatment team, had looked at my recent brain MRI and arrived at diametrically opposing interpretations. One said a new tumor, growing like crazy, had appeared since my surgery, and the other said there was nothing unusual going on.
My case was put before a "tumor board" for review. The National Cancer Institute defines a "tumor board review" as:
A treatment planning process in which a group of cancer doctors and other health care specialists meet regularly to review and discuss new and complex cancer cases. The goal of a tumor board review is to decide as a group on the best treatment plan for a patient. These meetings can involve specialists from many areas of health care, including medical oncologists, radiation oncologists, surgeons, pathologists, radiologists, genetics experts, nurses, physical therapists, and social workers.
A few days later Dr. Neuro-Oncologist called to let me know the board's decision.
"The board agreed with the conclusion that the areas we discussed last time were most likely blood products. Treatment can proceed," said Dr. Neuro-Oncologist.
I could barely believe what I was hearing. In the time since my wife and I had met with the two doctors, I'd told my entire family what they had said. It was one of the worst experiences of my life. The subtleties of doctors disagreeing about data are utterly lost on those who are scared, which was to say everyone including myself. The entire affair was extremely draining. By the time I had told everyone, I felt half-dead.
Having just been dealt a heaping dose of emotional whiplash by Drs. Staff Surgeon and Neuro-Oncologist, I somehow found the composure to ask, "Was Dr. Staff Surgeon present at the tumor board meeting?"
"No," said Dr. Neuro-Oncologist. "They should be calling you soon to discuss their views."
A few days later, Dr. Staff Surgeon called.
"MRIs are hard to read," Dr. Staff Surgeon began. "Tumors and other things often look the same." Dr. Staff Surgeon went on to explain that they agreed with the board's interpretation and that my prognosis might be more favorable than originally thought. "Ultimately, the interpretation doesn't change the approach. Chemo-radiation therapy should happen regardless."
The weeks ahead would give me plenty of time reflect on Dr. Staff Surgeon's words. The problem is that brain MRIs are not some kind of supplementary diagnostic technique in glioblastoma. They are the alpha and omega of patient diagnosis and monitoring. Nothing else — not CT scans, not blood work, not even in-person examination is weighted more highly in glioblastoma cases. The brain is an organ completely encased by bone and the only way to get a read on it, short of highly invasive brain surgery or biopsy, is MRI. What I'd just witnessed was a limit to this front-line diagnostic technique for my terminal illness. It would, unfortunately, not be my last experience with this problem.
A famous quote often pops up when complex, messy processes meet reality: "Laws are like sausages, it is better not to see them being made." If this incident taught me anything, it's that diagnoses, laws, and sausages may have more in common than I thought.