If you know me, you know I have a passion for caring for patients with pancreatic cancer. I am not sure why. Maybe it’s because they have the worst prognosis among all solid tumors, and if not me, who would take up the cause? I committed to studying this dreadful disease early in my career, and unraveling the biology of this perverse beast was the interesting part. For patients, though, we only had 5-FU to push. Gemcitabine came along in 1997, but we didn’t see truly active drug regimens like FOLFIRINOX or gemcitabine and nab-paclitaxel until 2010 or later. Talk about slow progress!
Most of the patients I see will die of this disease. We can prolong their lives, but it is a temporary reprieve. Invariably, when I see a new patient, he or she wants to know their prognosis. When I ask what they mean, I’m told, “Well, how long will I live?” I answer honestly:
“I don’t know. Statistics aren’t very helpful here. Statistics are derived from a group of patients. You are an individual. You have a 50-50 chance of responding to treatment. It’s binary; you will either respond to treatment or you won’t. And the deeper and more durable response you have, the longer you will live. And the longer you live, the more chance there will be for the next successful treatment to come along.”
I believe this messaging is important. We cannot deny these patients hope.
Occasionally, I am asked by a patient with metastatic disease if I have ever seen anyone get cured. Thankfully, I can say yes and mean it. I follow 5 patients, all with very different stories, and all with well-documented metastatic disease who have remained disease-free for years after treatment. I don’t have a single explanation for this. Treatment and/or management was different in each case, so what accounts for these amazing outcomes? Was it my skillful care and thoughtful selection of drug? Probably not. Was it some sort of divine intervention? Maybe. I don’t know. But it happened and that’s what counts. And when I tell these stories, it gives my patients hope.
Hope needs to be protected. It is an important emotion that gives us courage to move forward. We all hope for something. During the COVID pandemic, we hoped for an effective vaccine. When we got one, we hoped people would accept it. And as we ride this out, with more sinister variants lurking around the corner and questions about waning immunity, we still hope we will safely see the pandemic come to an end.
When I was in oncology training, I struggled with my responsibility to be honest and forthright about a patient’s prognosis without taking away hope. I remember asking a wise teacher about this. I asked, when a patient with a terminal disease says they hope they will be cured, what do I say? Without hesitating, she said, “you must say that you hope so too.” She was so right.