Living Downstream

Thirty years ago, in between my sophomore and junior years of college, I was diagnosed with bladder cancer. Those are amazing words to write: “Thirty years ago I had cancer.” I had just turned twenty. I was hoping that I would live long enough to have sex with someone; I hadn’t done that yet. I could not have imagined, while lying in my hospital bed, exhaling anesthesia, that someday I could write, “Thirty years ago I had cancer.”

Last September, on a sunny afternoon, the phone rang while I was trying to meet a writing deadline. It was the nurse in my urologist’s office. She was calling to say that the pathologist had found, in the urine collected from my last cystoscopic check-up, abnormal cell clusters. And traces of blood.

After I hung up, I looked out the window of my small house where the sun still shone on the last of the marigolds. I looked down at my computer screen where the cursor still blinked on the same paragraph. I noticed the crayons on the floor, cast aside in the morning rush for the school bus, and could hear in the kitchen the tomatoes still bobbing in the stockpot that was steaming away on the stove. The world was still the same, but it felt to me a suddenly altered place.

I provided a second urine sample for further testing, and based on the results of that, a third sample that was sent out for genetic analysis. I began living within that period of time known as watchful waiting. This is a familiar place to me. Watch means screening tests, imaging, blood work, self-advocacy, second opinions, and hours logged in hospital parking garages. Wait means you go back to your half-finished essay, to the tomatoes on the stove. You lay plans and carry on within the confines of ambiguity. You meet deadlines and make grocery lists. And sometimes you jump when the phone rings on a sunny afternoon. Bladder cancer recurs in 50-70 percent of patients. There are evidence-based reasons for feeling jumpy.

Thirty years ago I had cancer. When I left the hospital, I went back to my college dormitory, resumed my life as a biology major with a side interest in poetry, and began mucking around in the medical literature. I was curious about a series of questions my young, new-to-the-area urologist had asked me a few days after my surgery. Had I ever worked in a tire factory? Any exposure to textile dyes? What about employment in the aluminum industry? As I lay there, still tethered to catheter tubes, these queries had seemed surreal to me. I was the clean-living winner of the local Elks Club scholarship, a high-achieving college student with plans for graduate research. Of course I wasn’t out vulcanizing tires or smelting aluminum. But why had he asked?

It didn’t require many hours in the university library to learn that bladder cancer is considered a quintessential environmental cancer, meaning that more evidence exists for a link between toxic chemical exposure and bladder cancer risk than for almost any other kind of cancer, with data going back a hundred years. I also learned that the identification of bladder carcinogens does not preclude their ongoing use in commerce. Just because researchers discover, through careful scientific study, that a chemical contributes to cancer doesn’t mean it’s automatically banished from our economy.

On all these fronts, not much has changed in the three decades since my diagnosis. Of the 80,000 synthetic chemicals now in use, only about 2 percent have been tested for carcinogenicity and, since 1976, exactly five have been outlawed under the Toxics Substances Control Act. Our environmental regulatory system requires no rigorous toxicological testing of chemicals as a precondition for marketing them. It promulgates legal limits on chemical releases, largely overlooking that we are all exposed to trace amounts of many contaminants, and not just one at a time. It is still no one’s job to make sure that the total burden of toxic exposures is not too much for any one of us.

In 1981, I went off to graduate school, pursuing first a degree in creative writing and then another in field biology. Both offered opportunities to travel far from my hometown in central Illinois. Wherever I was, I dutifully submitted to cancer check-ups. I also started a collection of pamphlets on bladder cancer, gathered from the various waiting rooms and hospitals where I spent time. I noticed that they seldom contained the words “carcinogen” or “environment.” (More on these in Chapter Twelve.) Nor were these words used anymore in conversations I had with my various health care providers. There seemed to be a disconnect between the evidence that medical researchers had compiled about the environmental origins of bladder cancer and what patients heard about that evidence. To judge by the medical intake forms, the more relevant variable was genetics: I was asked again and again about my family medical history. I was happy enough to provide it. There is a lot of cancer in my family. My mother was diagnosed with breast cancer at age 44. I have uncles with colon cancer, prostate cancer, stromal cancer. My aunt died of the same kind of bladder cancer—transitional cell carcinoma—that I had.

And when I looked at the literature on cancer among adoptees, I learned that, in fact, the chance of an adopted person dying of cancer is more closely related to whether or not her adoptive parents had died of cancer and far less related to whether or not her biological parents had met such a fate. What runs in families does not necessarily run in genes. And while knowledge of one’s genetic history is important for understanding health risks, so too is knowledge about one’s environment. (More on this in Chapter Eleven.)

The environmental questions posed by my first urologist became the seeds of this book. The research it required began in the stacks of the Harvard Medical School Library, where I spent a postdoctoral year, and continued in my Midwestern hometown. As a biologist, my goal with this book was to bring together two categories of information—data on environmental contamination and data on cancer—to see what patterns might exist, to identify questions for further inquiry, and to urge precautionary action, even in the face of incomplete answers. To explore the extent to which toxic chemicals, including cancer-causing agents, have trespassed into our air, food, water, and soil, I drew heavily upon databases available under federal right-to-know laws. Cancer registry data provided a view of cancer’s trajectory through time and its distribution across space. Various published studies, gathered from far-flung corners of the biological and medical literature, offered other glimpses of the connection between cancer and the environment. Informing my discussion throughout this book, these range from reports on pesticides, river sediments, and trash incinerators to surveys of farmers, sport anglers, and nursing mothers. They include investigations of laboratory animals, wildlife, and pets, as well as examinations of human tissues and cellular machinery. They range from atmospheric science to neuroendocrinology.

But this book is also a deeply personal story. Woven throughout the various scientific descriptions is a memoir set on the east bluff of the Illinois River where I grew up. As a biologist, I will tell you that my Illinois home is utterly unexceptional: as in many other communities, the dramatic transformation of its industrial and agricultural practices that followed World War II had unintended environmental consequences. This place nevertheless receives my devotional attention because central Illinois is the source of my ecological roots and my search for these roots is the other half of this book.

Bladder cancer rates among women are rising. I am one data point in that statistical story. Bladder carcinogens have turned up in my hometown aquifer and in the sediments of the river that runs by it. (How did they get there? What shall we do about them?) I am one voice in that human story. Both of these stories are told here.

In January 2004, the phone rang while I was trying to meet a writing deadline. It was a film director (not a nurse!), and the conversation we had with each other that day led directly to this new edition. Chanda Chevannes, the director, wished to option Living Downstream for a documentary. In so doing, she intended to represent cinematically both of its stories—the scientific one and the personal one. This happy plan created for me three tasks. One of them was to accompany her and her Canadian film crew to central Illinois.

And so I did. I introduced them to the river barges (Chapter Nine), the ethanol plant (Chapter Five), and the wind turbines across the road from my cousin John’s farm (Chapter Seven). I introduced them to John’s cornfields—and to the combines advancing across them, the afternoon thunderheads building over them, and the way you can navigate from them using a grain elevator as a compass point (Chapter Eight). I introduced them to the toxic waste landfill (Chapter Five again) and to my mom’s backyard swing and my Aunt Ann’s pear tree (Chapter Ten). When they commissioned a helicopter to explore the Illinois River valley from above, however, they were on their own.

The second task was to introduce them to my private life as a medical patient (Chapters Six and Eleven). This was trickier. It meant bringing a film crew to a cystoscopic examination during which a fiber-optic tube would be inserted into my bladder. It meant that men carrying a movie camera and a boom mike would follow me into a room with a stack of backless, blue cotton gowns (one of which I would change into) and up onto an examination table equipped with stirrups (into which I would place my feet). Here, all eyes but mine would stare into the large-screen monitor (onto which the interior walls of my bladder would then be displayed). Meanwhile, I would be lying quietly, pondering the ceiling tiles. Taped to the walls around us all would be posters of enlarged prostates and penile dysfunctions (the anatomical details of which I ritualistically study in the moments before the doctor steps through the door). And the camera would be rolling through it all.

I was determined to carry this off. Cystoscopies save lives. However ghastly a cystoscopic exam might sound to the uninitiated, it is brief, minimally painful, and can locate cancers at an early stage. As a tool for screening and early detection, it is unsurpassed. (From a medical point of view, I give cystoscopies the sine qua non award along with colonoscopies and Pap smears.) No one who finds blood in their urine should delay seeking help out of fear of a tube with a flashlight on the end of it. So, if I could bear witness to the value of cystoscopes, I would do it. If I had the chance to pull back the curtain of silence surrounding urological exams, I would take it. As someone who has undergone upwards of seventy cystoscopic exams, who better than me?

And so I did, and in so doing, discovered something unexpected: cystoscopies are actually better when you bring a camera crew along. Whether or not I successfully demystified the cystoscopy for the movie’s audience, I certainly demystified it for myself that afternoon. The procedure room—that chamber I had always entered with solemn ceremony—now seemed dinky and ordinary. The penis posters were suddenly hilarious. And the quiet, reassuring voice of my urologist during the exam itself—which I have always appreciated—seemed to me, more than ever, a sign of steadfast human compassion. The relationship between doctor and long-time patient can be an intimate one.

My third task was to explore with the film director the science of the book (Chapters One through Twelve plus nearly 100 pages of source notes). Chanda had to figure out how to make cancer data visible to her film audience—a challenge that took her to laboratories and field stations across the continent to shoot, for example, whale autopsies in Quebec, frog studies in California’s Salinas River, tissue micrographs in federal offices in North Carolina, and DNA extraction in cancer laboratories in Vancouver. Meanwhile, I went to work updating the scientific research in the book itself.

The result of those revisions is this second edition. The time interval between this edition and the first represents a period of rapid growth in our understanding of the environmental links to human cancer. For the most part, new published findings support the evidence I had compiled in 1997. I was thus able to add a few more pieces to the big jigsaw puzzle of cancer causation and answer some questions that earlier studies had raised. Where I needed to make corrections or shift the emphasis, I did. Happily, my residency at Cornell University’s Program on Breast Cancer and Environmental Risk Factors and subsequent advisory role in the California Breast Cancer Research Program have offered me, over the past ten years, a front-row seat from which to observe scientific research in action.

Providing up-to-the-minute insights into the ongoing encroachment of industrial chemicals into our communities proved more problematic. Databases that disclose the routine release of 650 toxic substances from industrial facilities were first made available under federal right-to-know laws passed by Congress in 1986. They allowed the public to identify polluters within their communities and researchers to track pollution and cross-reference with cancer patterns. In the mid-1990s, when I was drafting the first edition of this book, the Toxics Release Inventory went up on the Internet. Between 2001 and 2008, however, the inventory was scaled back, and thousands of facilities were no longer required to report. In 2009, some of the original requirements for reporting were reinstated. However, because of the changing criteria for reporting, right-to-know data available now are less comprehensive than in years past. Therefore, I let stand much of my previous reportage on toxic chemical contamination, which draws on data I gathered in the mid-1990s when the databases were more robust.

The personal story of Living Downstream is also unchanged. I wrote this book as a single woman in my thirties who lived with my dog in a Boston apartment. In those days, I ignored national holidays and read cancer registry data in the bathtub. That solitary woman is still the narrator of this book. And this means that its autobiographical scenes are set in the recent past while the scientific descriptions are au courant. Thus, in Chapter Ten, the drama on the farm takes place in fall 1994, but the passages that describe the behavior of dioxin include evidence published in subsequent years.

By contrast, my own life has been altered in many ways since I wrote the first edition. I am now an almost-50 mother of two who is married to the father of my children—he is also their art teacher—and we all live in a small village in upstate New York. I am seldom allowed reading time in the bathtub, and I not only observe Valentine’s Day, I have baked heart-shaped pizzas for the entire population of a nursery school. For descriptions of my embedded life as a mother, I gladly refer the reader to Having Faith: An Ecologist’s Journey to Motherhood and my forthcoming book on the environmental life of children.

Over the last decade, six clear trends have emerged in our understanding of the environment’s contribution to cancer. The first is a growing acknowledgment that cancer causation is complex. The old way of thinking was to imagine cancer risk factors as independent agents that could be boxed up into three neat categories: genes, lifestyle, and environment. Of the three, genes and lifestyle were thought to be the dominant players with only a small fraction of cancers attributable to the environment. That kind of simplistic accounting is increasingly seen as naive. Cancer is now believed to result from a web of interwoven variables, any one of which can modify another. For example, breastfeeding is protective against breast cancer. It is considered a classic lifestyle factor: you can choose to nurse your baby or not, and if you do, you may lower your later risk of breast cancer. But evidence also suggests that exposure to certain organochlorine chemicals may impair a woman’s ability to lactate and breastfeed successfully. Thus, environmental contaminants can affect a lifestyle choice that, in turn, affects breast cancer risk. In short, cancer risk factors can interact with each other to exert direct and indirect effects.

The second trend is an emerging awareness of the importance of epigenetics. The old way of thinking saw DNA—the bricks and mortar of our genes—as a master molecule. Cancer was thought to arise through the inheritance of bad genes or by damage to good genes (mutations). The new thinking acknowledges that cancer can arise through a third route: by changing the behavior of genes. The study of how substances alter gene expression is part of the field of epigenetics. Some chemical exposures appear to turn on and turn off genes in ways that disregulate cell growth and predispose for cancer. From this perspective, our genes are less the command-and-control masters of our cells and more like the keys of a piano, with the environment as the hands of the pianist.

The third trend is a mounting appreciation for the role of endocrine disruption in the story of cancer. If there were ever a contest for Most Easily Duped biological system, I would nominate our endocrine system—the hormonal messaging service that guides our development, runs our metabolism, and allows us to reproduce. Many chemicals, at vanishingly small concentrations, have the ability to interfere with hormonal signals, sometimes by crude imitation. The endocrine system is impressively incapable of distinguishing between real hormones and environmental chemicals that act like hormones. It is a patsy for sabotage. When I wrote the first edition of this book, my focus was on chemicals that had the ability to imitate estrogen. But the simple mimicry of sex hormones is now only part of the story of endocrine disruption. Hormonally active chemicals can infiltrate the signaling circuitry throughout our bodies. There is even a newly identified category of endocrine disruptors known as obesogens: chemicals that perturb the suite of hormonal messages that oversee fat deposition.

An ancient principle of toxicology posits that the dose makes the poison: “Solely the dose determines that a thing is not a poison.” That axiom dates back to the sixteenth century, and it still appears on the opening page of my copy of Casarett and Doull’s Toxicology, 6th edition, expressing the prevailing belief that our risk for harm from exposure to an inherently toxic substance is proportional to how much we were exposed to. There is still a lot of truth to this old chestnut. But what’s becoming increasingly evident is that the risk posed by a toxic substance depends as well on when we were exposed. Timing matters. Especially if the exposure in question involves an endocrine disruptor. The fourth trend, then, is an expanding recognition that the timing makes the poison. The search for environmental links to breast cancer, in particular, is increasingly focused on exposures early in life that influence the course of breast development. Altered breast development may increase susceptibility to breast cancer in later life. As is discussed further in Chapter Six, the majority of breast cancers arise from structures within the ducts of glands called terminal end buds. Any chemical that increases the number of cells in the end buds or delays their maturation, according to the new thinking, may raise the risk for breast cancer.

The fifth trend is a recognition that combinations of chemicals may have consequences not predicted by one-chemical-at-a-time analyses. Chemical mixtures need attention. Real-life exposures seldom involve single agents. And yet when testing chemicals for their potential to cause cancer or when deciding what the acceptable limit of exposure to suspected carcinogens should be, our regulatory system considers them in isolation from each other. Some chemicals operate down similar cellular pathways; their effects may be additive. Others may interact in more complex ways, as when exposure to one pesticide alters the activity of enzymes in ways that cause a second pesticide to be metabolized into a more powerful toxicant. Mixtures of chemical exposures with other stressors—like obesity or poverty—may also create cancer risks not predictable by examination of each variable by itself.

The sixth trend is a shift toward embracing the precautionary principle as a normative guide to environmental decision making. This idea was first articulated in Germany in the 1970s when scientists realized they needed to halt the ongoing death of their nation’s forests in advance of working out all the details of how exactly air pollution was contributing to the problem. Now enshrined into the Treaty of the European Union, the precautionary principle urges us to take action to prevent harm in situations where substantive proof is unavailable and where delays caused by waiting for proof may create irreversible, catastrophic damage. In so doing, the precautionary principle grants the benefit of the doubt to public health rather than to the things that threaten it. More on this in Chapter Twelve.

The most frequent question I am asked by my readers is, how do you have hope? I have two responses, one personal and the other evidence-based. The personal one: I’m a cancer survivor. I learned, early on in my life, how to have hope in times of desperation. I am also now a mother. I would like my children to live in a world without carcinogens in the groundwater. I would like them not to fear that a phone ringing on a sunny afternoon is bringing them bad news from a pathology lab. In other words, despair feels like a luxury I cannot afford right now.

My other answer goes like this. The mounting evidence that our environment is playing a bigger role in the story of cancer than previously supposed is good news because we can do something about it. We can choose, for example, to change our antiquated chemicals policy. We can resolve, collectively, to divorce our economy from its current dependencies on toxic chemicals known to trespass inside our bodies. We can decide that the presence of cancer-causing substances in our air, water, and food is too expensive. A 2009 study, for example, has found that coal mining in Appalachia costs the region five times more in premature deaths, including from cancer, than it provides to the region in jobs, taxes, and economic benefits. In California, the production and use of hazardous chemicals cost the state $2.6 billion in 2004 alone in lost wages and health-care expenses to treat workers and children with pollution-linked diseases. (As a percentage of U.S. health-care spending, which has tripled since 1970, cancer is the third most costly condition. For an individual person, cancer is the most costly.)

We can change our thinking. Rather than viewing the chemical adulteration of our environment and our bodies as the inevitable price of convenience and progress, we can decide that cancer is inconvenient and toxic pollution archaic and primitive. We can start seeing the creation of carcinogens as the result of outmoded technologies. We can demand green engineering and green chemistry. We can let our systems of industry and agriculture know that they are suffering from a design flaw. (See Chapter Five.)

By contrast, none of us (adopted or not) can change our ancestors. If the science had instead pointed to genes as the kingpins of cancer, if nothing could be done but wait for the ticking time bombs inside our cells to detonate at random, then I would feel depressed. Happily, that is not our situation.

The even better news is that the synthetic chemicals linked to cancer largely derive from the same two sources as those responsible for climate change: petroleum and coal. Finding substitutes for these two substances is already on the collective to-do list. The U.S. petroleum industry alone accounts for one-quarter of toxic pollutants released each year in North America. This does not include the air pollutants generated from cars and trucks burning the products that the petroleum industry makes. (As is described in Chapter Eight, vehicle emissions are linked to lung, breast, and bladder cancers.) Coal-burning electric utilities are also among the nation’s top generators of toxic chemical releases, as are mining operations. Investments in green energy are therefore also investments in cancer prevention. In this, it feels to me that we are standing at a historic confluence, a place where two rivers meet: a stream of emerging knowledge about what the combustion of fossil fuels is doing to our planet is joining a stream of emerging knowledge about what synthetic chemicals derived from fossil fuels are doing to our bodies.

The War on Cancer, declared by President Nixon in 1971, has savored few victories. The idea of a cure, presumed just around the corner for decades, seems almost fanciful. With a few notable exceptions, improvements in existing treatment have not translated into significant numbers of lives saved. Indeed, the death rate from cancer is only 6 percent lower than it was in 1950. In 1999, cancer surpassed heart disease as the leading killer of Americans under 85. At present, 45 percent of men and 40 percent of women will be diagnosed with cancer at some point during their lives, a far higher proportion than 50 years ago. And as our population ages, the number of people suffering from cancer is expected to jump by 45 percent in the next two decades.

But data from cancer registries—which receive my close attention in Chapter Three—also contain another message: eliminating exposures to carcinogens saves lives. The death rate from cancer is now falling. That decline is largely attributable to the success of smoking cessation programs and changing attitudes about the glamour quotient of cigarettes. Overall cancer incidence has also dropped, slowly but steadily, over the last decade, likewise driven by declines in lung cancer diagnoses and, to a lesser extent, colon cancer. (Colonoscopies: sine qua non.)

With bans on smoking in public places now enacted in many states and tobacco under the regulatory control of the Food and Drug Administration, U.S. smoking rates will almost surely decline further in the years to come. The lives saved will include people who might otherwise have started to smoke or continued smoking, as well as those of us non-smokers who would otherwise have breathed in the carcinogens that our smoking compatriots breathed out. We will not know which among us owe our continued existence to the collective decision to denormalize tobacco, but the lives spared will be visible in the descending slope of the line that expresses trends in death from tobacco-related cancers over time. None of us aspires to become a data point on that graph.

Here in upstate New York, smoking was banned from public places in 2003. The ironic result for my young children was that they saw cigarettes for the first time, as the tobacco-addicted took to the sidewalks and alleyways. In the winter months, smokers were easily identifiable by their hunched-over posture. As we looked out of the window of our village coffee shop one blizzardy afternoon, my son, then three years old, whispered to me with alarm, “Mama, there’s a man in the snow trying to light his face on fire!”

To my children, smoking doesn’t look glamorous. It looks grotesque. And their perception is a direct result of changes in public policy that were put in first motion during my own early childhood when, in 1964, the U.S. Surgeon General warned, on the basis of good but partial evidence, that smoking causes long cancer. That was a courageous decision and an example of the precautionary principle in action. Proof for a link between smoking and lung cancer was not demonstrated until 1996, three decades later.

In Living Downstream, I advocate that we bring the same precautionary approach to other carcinogens, known and suspected. In so doing, I fully agree with the conclusion of a consensus statement, signed by many members of the cancer research and advocacy community and submitted to the President’s Cancer Panel in October 2008:

The most direct way to prevent cancer is to stop putting cancer-causing agents into our indoor and outdoor environments in the first place.

This task is made urgent by ascending rates of cancers unrelated to tobacco. Among U.S. men, age-adjusted incidence rates of multiple myeloma and cancers of the kidney, liver, and esophagus are rising. Among women, the cancers of increasing frequency include melanoma, non-Hodgkin lymphoma, leukemia, and tumors of the bladder, thyroid, and kidney. As is explained in Chapter Three, improvements in diagnostic techniques cannot explain away these trends. Many of the cancers that are now increasing in incidence are those with links to environmental exposures.

Most troubling: childhood cancer has increased steadily since 1975. Cancers among teenagers and young adults are also more prevalent. Indeed, support groups now abound for young adults with cancer, who have their own nonprofit organization (The I’m Too Young for This! Foundation), their own radio show (“The Stupid Cancer Show—The Voice of Young Adults with Cancer”), and a signature alcoholic beverage (the cancertini). Rising rates of cancer among college students have spawned the birth of a new social movement that includes lapel pins, T-shirts, Visa cards, networking sites, retreat centers, and the slogan, “Stupid Cancer. Survivors Rule.”

I am inspired by activism that destigmatizes cancer and breaks silence about its presence among us, old and young alike. Ultimately, though, I would prefer that cancer among twenty-year-olds return to levels of startling uncommonness. And I believe this goal is attainable. Living Downstream is my best attempt as a biologist and a cancer survivor to lay out the case for cancer prevention through environmental change. There are individuals who claim, as a form of dismissal, that links between cancer and environmental contamination are unproven and unprovable. There are others who believe that we are obligated to act, as did the surgeon general in 1964, on the basis of the evidence we have before us now. “To ignore the scientific evidence is to knowingly permit thousands of unnecessary illnesses and deaths each year.” This was the conclusion of a recent state-of-the-science review of the links between cancer and the environment.

I have copied that sentence onto the outside of a file folder on my desk. In it are published papers documenting links between bladder cancer and a group of synthetic chemicals called aromatic amines. The earliest report comes from a German surgeon in 1895 who noticed bladder cancer among textile dye workers exposed to the color magenta during a period of time when coal tar-derived pigments—aromatic amines—were replacing plant-based pigments in the European textile industry. Another paper recounts that all fifteen workers in a British mill had succumbed to bladder cancer. A series of papers in the 1950s painstakingly documented increased rates of bladder cancer among chemical industry workers exposed to aromatic amines. Nearly identical findings continued to be published in the 1960s and 1980s. In 1991, the National Institute for Occupational Safety and Health uncovered bladder cancer rates among aromatic amine-exposed workers that are twenty-seven-fold higher than normal. The most recent paper I have was published in 2009. It reports elevated bladder cancer rates among farmers who use imazethapyr, a pesticide containing aromatic amines. Imazethapyr was registered for use in 1989—more than 100 years after the German surgeon’s early warning.