I’ve known that I’ve had tumors in my pancreas since 2009. Until now I’ve done nothing about them.
This might sound like a counter-intuitive, even foolhardy strategy, especially for an oncologist, who should surely know better than to let his disease gain an advantage through his own inaction. But I don’t have the “usual” type of pancreatic cancer, the kind that claimed the life of Patrick Swayze and has sentenced many other lesser-known patients to a hasty, painful, jaundiced death.
Adenocarcinoma of the pancreas is, indeed, a fearsome foe; I certainly haven’t compiled a list of my favorite malignancies, but if I was forced to rank them, this highly fatal illness would rank very near the bottom, jostling for dead last with its anatomic cousin esophageal cancer and its liquid relative acute leukemia.
A large part of the problem is the anatomy of the pancreas itself. It’s buried in the abdomen, closer to the back than the front, kept deep like a secret. It’s one of the those organs we seldom think about unless it stops working properly — just ask a Type 1 diabetic how much they miss insulin supplied painlessly rather than through needle pricks. Many patients don’t know there’s a cancer in their pancreas until it’s far too late. Especially with the more common adenocarcinoma variant, the first hint of trouble might be turning yellow, by which point the tumor could already be inoperable.
A contrarian by nature, I just had to be different. I have multiple endocrine neoplasia Type 1 (MEN1), so my pancreas is genetically programmed to develop a “better” form of tumor: neuroendocrine. In my case, and others’ (exhibit A: Steve Jobs), the hormone-producing cells of the pancreas can overgrow, presenting a very different but still appreciable threat. The pancreatic neuroendocrine tumors (PNETs, for short) develop, on the whole, far more slowly than adenocarcinomas, and, as such, I’ve been watching mine slowly change for years — almost a decade, in fact. To call them a time bomb would be shamefully hyperbolic, or at least require invoking an exceedingly long fuse that has been smoldering almost imperceptibly.
And yet, they’ve persisted, ticking away at the indolent end of the proliferative spectrum. I’ve been serially observing them with endoscopic ultrasound, and my most recent EUS showed that my dominant tumor has crossed an important size threshold where it is no longer likely to remain quiescent. The mass has also begun to indent the superior mesenteric vein, so it is time to remove it before it becomes inextricably involved with the blood vessel or uses it as a conduit to spread.
On August 7th, my long period of watchful waiting will end, and I will undergo a Whipple procedure. Doctors are not immune from our own health problems, but we are privileged to study the human body and then tend to “the thousand natural shocks that flesh is heir to.” As a patient-physician, I hope to be two-faced in the best sense of the phrase and to make my disease and its management an open book for mutual learning.
There are many reasons I hope to look back years from now and read these words again, but above all, I hope to establish a deep wellspring of empathy to which I can return for a revitalizing reminder of what it’s like to be on the receiving end of health care.
Mark A. Lewis is a gastroenterologist who blogs at Of Tumors and M.E.N. He can be reached on Twitter @marklewismd.
Image credit: Shutterstock.com
