Reporting on Cancer When Causes Remain Elusive

Published on
April 15, 2014

The hardest thing in writing about a mystery is wanting to solve it. What good is a whodunit without the revelation? Mysteries — the fictional kind, anyway — are at first messy and confusing, but those who stick with them do so with the expectation that the pieces will align, that at a certain transparent moment, dutiful readers will be rewarded with the truth before the author divulges it herself.

When I mentioned to friends and strangers that I was writing about a childhood cancer cluster in Fallon, Nevada, still unresolved after 10 years of scientific investigation, they inevitably would ask, “What do you think caused it?” I would reply that I didn’t know, which was the truth, and still is, and explain that there were many possibilities: A leaky jet fuel pipeline that ran beside two elementary schools; arsenic and uranium in the water; tungsten, airborne from a nearby mill; a virus, spreading among susceptible children. “Which do you think is the likeliest?” they then would ask.

There were some things I did feel certain about. After I had pored over thousands of pages of case documents and public records, I was sure — though I still lacked hard proof — that the pipeline had leaked. I couldn’t say how much it had leaked, nor how many children were exposed, nor whether the fuel alone could have caused the leukemia. Similarly, I was shocked by the levels of arsenic and tungsten in children’s urine — surely it couldn’t be good for them — but neither metal had ever been linked to childhood cancer.

Read the story: Fallon's Deadly Legacy

It was tempting, as I combed the evidence, to try to answer the question myself. Though I did not admit it to those who asked, I wondered if I would find, buried in those decade-old reports, a number that someone had overlooked. I thought that with time would come some clarity. This happens in science: One person’s discovery makes another’s question, previously unanswerable for decades, suddenly answerable. But I found that advancements in the research further complicated my story. Scientists still don’t know what causes childhood leukemia though they suspect, I wrote, that it is “the culmination of a long chain of unfortunate events — a ‘causal pathway’ (as one researcher put it) — each link representing a genetic mutation provoked by toxic exposure, infection, or another challenge to the immune system.”

In other words, children who developed leukemia likely suffered multiple assaults, toxic and otherwise, throughout their lifetimes, before they were exposed to a common agent — a virus, perhaps — that triggered the leukemia. “Saying there’s one particular cause,” the researcher explained, “is a difficult thing to do.”

After I had written the story, the only thing clear to me was that mysteries, the kind that happen in real life, rarely have neat resolutions. This made the story difficult to write, but it’s also what made it intriguing. This was not another “Erin Brockovich” — a film, I would learn, that many epidemiologists resented for its cinematic reduction of a complex problem. “In the movies, it’s not about an epidemiological investigation,” one investigator lamented. “It’s about an attorney who rides in and holds a company responsible for putting something in the environment, all wrapped up with a nice bow on it.”

This tension between science and the law fascinated me; later in my story, it appears again when a parent of a sick child worries that other parents’ lawsuits might scare scientists away from researching the cluster. It is this moment, more than any other, I think, that revealed parents’ immense desperation and eventual despair in their search for an answer. The tragedy in the story is not that one company did a terrible thing. It is, rather, the psychological toll that uncertainty takes on the families of the sick and deceased.

The trouble with writing about a decade-old cancer cluster is that so much of the story happened in the past, a time near enough that most people wished to forget it and far enough that many already had. I was lucky to come across extensive records preserved from those years of the investigation, and those willing to speak with me were able to recall their stories in remarkable detail. It was clear how much that period had consumed them — how, for years afterward, they had replayed the events and conversations over again in their minds.

But, again, the thing I feared might undermine the story became its strength. “It is safe to say that most people in Fallon do not want to talk about the cancer cluster anymore,” I wrote. Town officials’ refusal to speak with me became an emblem of the community’s collective silence about cancer after national attention to the cluster had waned. For April Brune, the mother whose story threads together the piece, this silence has been particularly frustrating. April’s son, Ryan, died of brain cancer in 2009, five years after the leukemia cluster had mostly abated. April believes that the same agents that caused the cluster contributed to Ryan’s illness, but she has struggled to find people willing to talk about that time. Even most parents of cluster children are no longer willing to speak publicly. April’s frustration paralleled my own as a reporter, and her search guided mine. If I were a grieving parent trying to make sense of my child’s death, I wondered, what would I want to know?

And so writing this story was a lesson in embracing a truer kind of complexity, not the twists and turns of a mystery novel’s plot, but the unpredictable emotions that guide real people’s lives. In the end, it made sense to me that the memory of the cluster might cause some to close their doors and others to offer up boxes of papers they hadn’t had the heart to throw away. It made sense that the death of a child would cause one parent to search for the cancer’s cause and another to retreat in silence. Though most of my readers probably began the story looking for an answer, I think they appreciated that I never quite gave one.

“Thanks for telling the truth,” one commenter wrote, “that there is no tidy conclusion in this situation, that there are no winners … that science is messy, and that people and their communities are complicated.”

Photo by Ken Lund via Flickr.


Fallon's Deadly Legacy

Rethinking the "Cancer-Cluster Myth"