Malignant: How Cancer Becomes Us

  • S. Lochlann Jain
University of California Press, 2013 304 pp., hardcover, $60.00 0520276566 | ISBN: 0-520-27656-6

In Malignant: How Cancer Becomes Us, Stanford anthropologist S. Lochlann Jain writes of her personal experiences with breast cancer, creating a tapestry into which she weaves both personal and anthropological perspectives. Jain seeks to understand the many ways that cancer affects American society. She aims not so much to distill simple principles as to delve into challenges and paradoxes that surround cancer, and into the fundamental fabric of a society that both suffers and profits from cancer. Focusing on shortcomings and flaws that she has identified through her cancer experiences, Jain seems to be quite angry. She produces indictments of the economics and profit-making aspects associated with cancer treatment; of social perceptions of gender, sexual orientation and race; of medical mistakes; of randomized trials; of in vitro fertilization; of controversy surrounding the value of cancer screening; and of shortcomings of the medical establishment in dealing with patients' fears, and she ends with a description of the emotional and physical “rubble” that cancer and its treatment leave behind.

Stung by the three years that elapsed between her first symptoms and her diagnosis of cancer, Jain mourns what might have been had her cancer been caught earlier. She criticizes the physicians who evaluated her during that time. Then, more broadly considering the topic of medical errors, she is critical of an error analysis culture that focuses too little on the harmed patient. Ultimately, she argues that two key factors underlie what she believes to be a too-high prevalence of misdiagnosis: an erosion of the strength of medical malpractice laws (she is suing her own physicians), and a medical system that provides inadequate training on the prevention and reduction of medical errors.

Faced with intensive treatment for her cancer and an uncertain future, Jain subsequently contemplates the central currency of modern oncology science: the randomized clinical trial (RCT). Although she considers the strengths of RCTs as a discovery vehicle, she charges that these trials often take too long, cause patient suffering and yield debatable results of unclear significance. She detests the fact that RCTs are a vehicle applied to so many patients but have historically benefitted so few, even though she notes that there may not be an obviously better method for determining the best new treatments. She yearns for an approach that might somehow provide more benefit to each individual patient. In many ways, Jain's concern is not RCTs per se, but rather frustration at the slow increase in cure rates since the declaration of the war on cancer over 40 years ago.

Jain next considers potential reasons to explain why she developed breast cancer at a young age. She wonders whether it may have been caused by the hormone treatments she underwent as an egg donor for in vitro fertilization (IVF) and considers studies that have investigated whether a causal relationship exists between IVF and breast cancer. Although these studies are collectively inconclusive, Jain suspects that such a relationship must exist. She prosecutes IVF as an endeavor and compares the injection of hormones into healthy women to the testing of nuclear bombs. Recalling a paucity of information provided to her at the time of the procedure, Jain is also highly critical of the informed-consent process she experienced, feeling in hindsight that it inadequately described theoretical cancer risk.

In the context of critiquing other aspects of her cancer experiences, Jain also moves beyond the realms of science, medicine and commerce to an anthropologically inspired consideration of broader social principles. Vignettes of her own experiences are used to expose the reader to a consideration of social biases with respect to gender, sexual orientation, gender identity and race. She considers the implications of the diagnosis of gender-associated cancers such as breast cancer on gender identity and delves into historical and current social contexts that can make the journey even more difficult and complex for minorities. Through such considerations, Malignant also provides insight into the many faces of the author: a Canadian living in the United States who is stunned that 60% of US personal bankruptcies are driven by the financial burdens of illness, an academic worried about her career while undergoing cancer treatment, a lesbian fighting social biases, and perhaps first and foremost, a fearful young person with cancer who generally wants things to be better.

Throughout the book, Jain applies her anthropology training to creatively bring together well-selected examples from a diversity of both lay and academic sources. However, Malignant is not a dispassionate, objective academic analysis; it is rather a frustration-fueled indictment of the flaws, complexities and paradoxes that are intertwined with the system of cancer care in the United States. In the setting of this frustration, I felt that there were at times some level of bias and hyperbole in what might otherwise seem an academically framed discourse. Although passion often sways Jain's analyses, her passion is also a strength of the book, as the reader is brought along on an emotional journey of the vexation and devastation that cancer can bring. Setting aside the goal of a cure, Malignant brings the reader a memorable, educated, patient-centric view of how far we have yet to go in the war on cancer.