Free The Cost of Hope by Amanda Bennett Page B

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The Oregonian
. When Dr. Turner calls again, his voice is still upbeat, but his message is not. Terence does not just have an ordinary kidney cancer. He has an extremely rare form of kidney cancer called collecting duct carcinoma. Dr. Turner tells us that he is still optimistic, but we should probably look into this.
    In my tiny office at one end of the newsroom, looking out over Southwest Broadway, I tilt my computer screen discreetly away from the door. I am an editor. My fingers can be moving on the keys and I can seem to be working on some story. In reality, I am deep in the Internet.
    Kidney cancer is a tiny subset of all cancers. As I click away, I learn from the Kidney Cancer Association website that no one really knows what causes kidney cancer. In terms of who gets it, though, Terence might as well have had a bull’s-eye painted on him. Male? Check. One hundred sixty men will get it for every hundred women. Older? Check. He’s sixty years old, exactly the average. Overweight? Check to that too, despite both of our best efforts. Smoker? He and I both quit in the mid-1980s, in preparation for Terry’s arrival. That is more than fifteen years ago, but it still leaves thirty years of puffing in his past.
    In one regard we seem to be lucky. Like many cancers, kidney cancer can just cruise along silently, not causing anyone any trouble, until it suddenly starts causing a lot of trouble, and it’s too late. Bleeding. Lumps. Pain. The symptoms that suggest the tumor has broken through its own shell and is invading the body. Terence hasnone of that. Like about a third of his fellows, he is fortunate enough to discover the cancer while we are looking for something else. For kidney cancer in general, Dr. Turner is right—the signs do seem encouraging. The cancer hasn’t spread. That is the key. I look at one site and then another. I do the calculations once and then all over again. It always comes out the same. A sixty-year-old man with a 7-centimeter kidney tumor that hasn’t spread anywhere else has more than a 90 percent chance of making it for five years. Five years is as far as they are willing to project. That seems like forever. I’ll take it.
    But collecting duct cancer? That’s a different story. I have to go deep into the Internet to find anything at all. I scour every site I can find. I can find only about fifty cases anywhere in the literature. Fifty. That’s 0.00000667 percent of all the cancers in the world. I download research papers. The biggest study I can find is from Japan, involving only a dozen or so people. Almost all the other reports are of individual cases, and all come to the same conclusion: an aggressive tumor with poor prognosis. I search on the authors’ names. I search on the university names. In the lulls between stories, I call everyone whose name I can find on a paper or a study. I’m a journalist. I call people. That’s what I do.
    Most of the people I reach are just pure researchers and, while they are kindly and sympathetic, they know nothing about the actual disease or how it could be treated. The oncologists I call have either never even heard of the cancer or at most have heard anecdotally of a case or two. The same words keep popping up over and over in the studies: Rare. Aggressive. Most of the patients in the papers are dead within a few months of diagnosis.
    I wander out of my office feeling dazed after hours of research. My next-door neighbor is another editor, Jack Hart. He’s famous around the country for teaching storytelling techniques to journalists.He’s also a man of precise habits and Teutonic bearing. He has a decidedly unjournalistic discipline. My stories flap loosely and wildly to a deadline crash landing. His stories march tightly to an early finish and are laid out days ahead of time. My team pulls caffeinated all-nighters to finish. His team goes home to dinner. He walks with his shoulders squared. His desk is paper free. Looking at his