What is cancer? Much more than a disease, finds Stanford scholar

By Brooke Donald

Lochlann Jain's new book, which weaves her research with memoir, aims to start a new conversation about cancer as a cultural, not just medical, phenomenon. (Photo: Linda A. Cicero / Stanford News Service)

It wasn't until after her first surgery, when the cancer had been removed, that Lochlann Jain, associate professor of anthropology at Stanford, found that cancer really made itself present.

The very clear biological definition of cancer – a set of cells dividing too fast – seemed to make sense. But she realized that it couldn't by a long shot describe what cancer means culturally, economically and even medically.

What seemed like a simple question of cell division was anything but.

She struggled with whether – and how – to make something so painful and personal into an object of study.

"I didn't expect to write about cancer. I just thought I'd get this treatment over with and go back to my work," she said. "But then I realized the whole experience was just so full of paradox that I couldn't let it go. These paradoxes were tied to the structural issues of how American science and culture, so successful in so many arenas, deals with one of its largest failures."

A specialist in medical anthropology, Jain already had a deep interest in investigating how cultures deal with disease and illness. Her first book was an analysis of American injury law.

"I couldn't find any other work or books that were looking at how we live with, and justify, the contradictions that have become central to how we understand and treat both those scary dividing cells and the people who inevitably get the disease," she said.

Those contradictions included being blasted with radiation to cure one cancer that could end up being responsible for another, or being bombarded with images and stories of survivors when cancer means death for so many. Or hearing that a cure is on the way while also hearing about a new product or additive or chemical now believed to be cancer causing.

The ways we understand and represent cancer, Jain found, pointed to science, economics, medicine and policy that operate too often at odds with each other, and in ways that need to be understood if we are to move toward a recognition of the immensity of the cancer problem.

Her new book, which weaves her research with memoir, aims to start a new conversation about cancer as a cultural, not just medical, phenomenon. Malignant: How Cancer Becomes Us, published by the University of California Press, is out this month.

The book doesn't so much tell about her own experience, which she describes as all too ordinary, but it aims to change the ways we tell stories about cancer. Cancer, as she shows in dismaying detail, doesn't fit within the scientific and popular strategies we have to contain and make it manageable.

"I looked at how this thing we have all agreed to call cancer is actually a completely different thing in screening debates, public policy, decisions about toxic waste and products, and law courts," Jain said. She shows how this slippage has vast ramifications for how we understand the science and technology of cancer, and for why so little progress has been made in curing the diseases we call cancer.

She spoke with survivors, examined lawsuits about toxic exposures and misdiagnosis, looked at oncology trials and talked to economists, policymakers, industry representatives and others.

She found that everyone truly does understand cancer differently – from the lawyer trying to prove a case against a company processing a known carcinogen to a scientist putting together the latest clinical trial. Their understandings, or misunderstandings, have major consequences, Jain says, for everyone trying to treat, cure and research cancer.

Patients, she says, get caught in the middle, by being asked to take part in trials with virtually no chance of success, wear makeup and wigs to disguise cancer, and bear the costs of medical mistakes or pay life savings and more for treatments on which huge profits are being made.

"Over half of all Americans will be diagnosed at one point in their lives with an invasive cancer," Jain said. Without understanding the many layers of cancer, "we're missing a huge part of American experience, culture and economics."

Jain was diagnosed at 36 years old after three misdiagnoses. She devotes her research to analyzing the implications of thinking about cancer narrowly and as a disease that encompasses one set of rules.

"One of the problems with looking at cancer as an umbrella term is that we miss subcategories of people with cancer," she said.

She says, for example, that young adults have "been completely erased from the cancer puzzle" because many oncologists believe the catchall "cancer" is an old person's disease. She notes that there are more than 70,000 diagnoses of cancer in young adults each year.

"A vast majority of them are diagnosed with late-stage, high-risk disease, and there's hardly any research for people of that age group even though those people are the ones with young families with very little money in savings," she said.

She also critiques pink ribbon and yellow wristband campaigns, and a program that invites women and men to learn how to put cosmetics on during chemotherapy.

"But when you look more carefully at the cosmetics, you find that actually a number of known carcinogens are in those cosmetics, not only being sold on the market but also being given specifically to cancer patients," she said.

"A lot of cancer patients know this; so they feel offended when they're being given these kinds of things to put on their face," she said. "We need ways of understanding that better."

Jain says by covering up cancer, we miss a lot of what it really means. "What I'm trying to do in the book is show cancer is also an ugly thing. It's not just pink, it's not just yellow. It's an ugly thing and we have a lot to learn by looking at the ugliness of it," she said.

She says some of the ugliness includes insurance companies making money off the illness or carcinogens being poured into the environment and the feeling like there's not a lot that can be done about it. She says cancer patients are often blamed or questioned why they didn't do something, as if there was something they could've done.

"Overwhelmingly in cancer survivor groups, I heard that people felt completely misunderstood by their friends and peers as well as by their doctors," she said. "I started to notice these huge gaps not only in communication but in the ability to communicate."

She said one woman, who was diagnosed with ovarian cancer, complained that her friends continually asked her why she hadn't had a pap smear.

"She constantly had to come across the question of why couldn't she have solved her own cancer problem," she said. "And she kept having to say, a pap smear has nothing to do with ovarian cancer. And that kind of thing happened all the time.

"Looking at cancer is looking at a constant struggle between those who lose and those who win. It's looking at a constant economic shift between those who are paying and those who are making money for it."

That money is driving cancer research, and it's not getting us much closer to solving the problem.

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