The progression of my terminal illness, at first symptomatically and then radiologically was in one sense a blow. It meant that my incurable and terminal brain cancer had shrugged off the standard of care, chemoradiotherapy, with barely a flinch. The period between the end of chemoradiotherapy and progression (aka "progression-free survival") is highly correlated with overall survival in the glioblastoma clinical literature. So much that it's often used as a proxy for overall survival in clinical studies. And my progression-free survival had just demonstrated itself to look suspiciously like zero.
In another sense, I was relieved. Finally, Dr. Neuro-Oncologist and Dr. Radiation Oncologist could dispense with the hope they'd been trying feed me for months. The T2 MRI hyperintensities (bright spots), consistent with tumor growth, would no longer be dismissed as treatment effects. The question of whether or not the tumors were growing was now settled. Future meetings would discuss how much growth had occurred.
I was reminded of the sharp disagreement between Dr. Staff Surgeon and Dr. Neuro-Oncologist before chemoradiotherapy started. Both had seen my brain mapping MRI. Dr. Staff Surgeon was concerned by an area of T2 hyperintensity that they said was tumor growth. In fact, it was among the fastest progressions they'd ever seen. Dr. Neuro-Oncologist said the hyperintensity was "blood products" and nothing to be worried about. After a tumor board meeting Dr. Staff surgeon walked his opinion back, but now it looked like they were right after all.
At some point Dr. PCP and I had a conversation about this. When I started to relate the difference of interpretation, they stopped me, saying, "Wait, let me guess which one said what. Dr. Staff Surgeon said it was tumor growth and Dr. Neuro-Oncologist said it was nothing to worry about."
"Yes, exactly," I said. "How did you know?"
"Because the surgeons are always the realists and the oncologists are always the optimists." Dr. PCP went on to explain that they'd been a hospitalist at one point. A hospitalist helps in-patients work through the hospital system, conveying information and recommendations. A hospitalist told me "There is no 'no surgery'. You'll be dead in three months," when I was in the ER.
What bothered Dr. PCP was how oncologists would rarely level with patients about the severity of their conditions, leaving hospitalist to deal with the mess when reality made its inevitable appearance. Instead, oncologists tended to focus on the best-case interpretation, downplaying information to the contrary.
This reminded me of a book I'd read years before, Being Mortal by Atul Gewande. The author, a neurosurgeon, writes about caring for his father, who had been diagnosed with a spinal tumor. Gewande describes an exchange between his father and his oncologist:
The oncologist was now center stage… She proceeded in information mode. She laid out eight or nine chemotherapy options in about ten minutes. .. The only thing she did not offer or discuss was doing nothing. She thought that his likelihood of tumor response, — that is, of the tumor's not growing further, was around 30 percent. She seemed to not want to sound discouraging, though, so she added that for many patients the tumor becomes "like a low-grade chronic illness" that could be watched.
You could be back on a tennis court this summer, hopefully," she added.
I couldn't believe she'd really said that. The notion that he might ever get back on a tennis court was daffy — it was not a remotely realistic hope — and I was spitting mad that she would dangle that in front of my father. …
Gewande goes on to explain the horrifying treatment and slow, tortuous dying process his father endured at the hands of modern medicine.
Recently, I was surprised (but only a little) to find a similar exchange in Paul Kalanithi's When Breath Becomes Air. The author, also a neurosurgeon, tells his story of being diagnosed with lung cancer. Kalanithi describes the first meeting with his oncologist:
Eighteen months earlier, I'd been in the hospital with an appendicitis. Then I'd been treated not as a patient but as a colleague, almost like a consultant on my own case. I expected the same here. "I know now's not the time," I proceeded, "but I will want to talk about the Kaplan-Meier survival curves [a curve plotting patient survival against time]."
"No," she said. "Absolutely not." A brief silence. How dare she? I thought. This is how doctors — doctors like me — understand prognostication. I have a right to know.
My own experience and the experiences of two doctors within the health care system were consistent with the conclusion Dr. PCP had independently arrived at.
During one of my first meetings with Dr. Neuro-Oncologist, they'd told me about a patient who trained for an Iron Man triathalon during chemoradiation. If that meeting were to take place today, I'd know not to take this extremely unlikely response at face value, ask how this is relevant to someone like me with clear motor deficits, and ask to hear a story or two about patients whose conditions worsened during chemoradiation.
Oncologists, especially those dealing regularly with incurable cancers such as Dr. Neuro-Oncologist have extremely tough jobs. Day after day they come to work, trying to help patients who will in all likelihood die of their illness. Patients don't go to doctors for excuses. The demand cures, something many oncologists can't possibly deliver. The job must take heavy emotional toll. I suspect that all but the most hardened optimists are quickly weeded out.
From my perspective, this leaves patients on their own in some ways. I've dealt with this by realizing I'm going to get the absolute best-case interpretation from every oncologists no matter what. Other doctors, such as surgeons and PCPs, are likely to offer something closer to reality. With that perspective, there's a chance of arriving somewhere close to the truth.