Book Review and Analysis -- From Zero to Mastectomy: What I Learned and You Need to Know About Stage 0 Breast Cancer

FoxBookCoverAt age 52, Jackie Fox was diagnosed with DCIS, ductal carcinoma in situ, a form of breast cancer labeled stage zero, compared to stages 1 to 4. This slim book is an up-close and personal story of Fox’s roller coaster journey — from the moment her doctor gave her the diagnosis, telling her it was “not life-threatening” to an unexpectedly painful biopsy, two breast-conserving surgeries, an eventual mastectomy, excised lymph nodes, and reconstruction. She tallies the cost at over $80,000 and was thankful that she had health insurance to defray the cost. Fox shares her distress and walks readers through her experiences — riveting, painful, and compassionate — with the hope that sharing her story will help others to be comfortable with the choices they make. With DCIS now a full 20 percent of new breast cancer cases in the U.S., it is important for women with DCIS to share their experiences.

Jackie Fox begins her book by telling readers that, “… hearing the ‘C’ word is a shock” (pp. 6-7). No doubt cancer is a word that strikes fear, with a blow that is unlike anything many of us deal with day to day. Jackie reminds us that when we face such a diagnosis, we confront painful decisions that have consequences. “Your doctors, treatment choices and favored coping strategies may not be anything like mine,” she writes, “[but] I did what worked for me and have no regrets. I wish the same for you” (pp. iv-v).

The caveat of personal decision-making is important. Jackie Fox tells her readers that by definition DCIS is highly localized in the mammary ducts, is not invasive, and that before her diagnosis she had never heard of it. For over a decade, evidence-based medicine proponents have scrutinized the assumption that DCIS is an early form of cancer bound to progress to invasive cancer if left untreated. Evidence now points to DCIS as a “precancer” because it is not invasive (i.e., does not break boundaries and spread) and because treating it has not made a dent in new cases of later-stage breast cancers. A 2009 National Institutes of Health Consensus Conference reviewed the evidence and concluded that biomedicine should drop the term “carcinoma/cancer” for DCIS. Following a March 2012 meeting convened by the National Cancer Institute, a working group of experts made the same recommendation for DCIS and several other precancers. The rationale is that the term “cancer” increases anxiety and leads to overtreatment of precancerous conditions that have a very low chance of ever being life-threatening. Most cases of DCIS, for example, will never progress to an invasive form.

What if the ‘C’ in ductal “carcinoma” in situ is not really a carcinoma? Consider how someone like Jackie may have weathered her traumatic diagnosis if her doctor had said rather than, this condition is “not life-threatening” and is “often successfully treated,” that, “This is a precancer with about a 25 percent chance of progressing to invasive breast cancer in your lifetime and a very small chance of ever threatening your life. Here are some options and first steps.” The first step would have been the same as Jackie’s, a biopsy that allows a close look at the position, size, and kinds of abnormal cells present. Biopsies of DCIS across a population show a spectrum from slightly abnormal (lower risk) to what Jackie Fox had, a large and abnormal “cribiform” type that has about twice the average risk of progressing to invasive cancer. Unfortunately, the biology of DCIS and its invasive potential is poorly understood, so the default action has been to treat the precancers in the same way, as an invasive cancer.

These nuances are crucial when trying to understand treatment options. Unlike Jackie’s experience, the options for low-risk DCIS include removing, with clean margins, just the abnormal cells, and there is no follow-up radiation. This range on the DCIS spectrum is missing from the book. Starting with her doctor’s first recommendation of surgery and radiation, before the biopsy showed the type of DCIS Jackie had, she was not given the option of lesser treatment or “active surveillance.” The doctor did not mention the ongoing controversy over the disease classification of DCIS or the less invasive options for those who are low-risk. Jackie then labels her preference for watchful waiting as “unbelievably stupid.” But this self-characterization may be the result of a biomedical bias toward aggressive intervention that has come to be the gold standard. Renaming DCIS and other premalignancies to remove “cancer,” “carcinoma,” or “neoplasia” from the name, as the National Cancer Institute suggests, would be an important step in helping doctors and patients to think through the pros and cons of existing options.

Coupled with the fact that Jackie had a friend dealing with a stage 4 (metastatic breast cancer) diagnosis, she accepted the treatments and took ownership of her decisions. The big lesson of the past twenty years, and Jackie knew this, is that stage 0 is not the same as stage 4. The latter is responsible for at least 90 percent of breast cancer deaths. DCIS, as long as it stays DCIS, is not life threatening. Yet Fox makes it clear that the diagnosis and treatment of this stage zero can be devastating. No one prepared her for it, which is why she wrote her story.

Jackie Fox has a terrific sense of humor and writes in a conversational tone, making the book an easy read despite the details of painful procedures and recovery, as well as the challenges she faced. “Even at stage 0,” she writes, “cancer is a wake-up call and makes you realize what’s important [in your life]” (p.98). She shares practical insights about how she coped, and readers can learn from her various experiences with treatment. The trajectory of Jackie Fox’s story, however, suggests that each new step of bad news about her type of DCIS thrust her farther away from noticing the full spectrum of the disease and its role as a “precancer.” The oversight is understandable given her ordeal. But afterward, when revising published articles and essays, I hoped she would have helped readers to place themselves into the context of what is known about the full spectrum of DCIS. For instance, Fox recommends the 2005 edition of Dr. Susan Love’s Breast Book, which includes “DCIS” in its Glossary and explains in the text that it is “noninvasive” and “precancerous.” But since Fox did not discuss the complexities of DCIS as a precancer, her story does not engage the many challenges to received medical wisdom. Despite this, a reader can gain important insights from this book, especially when it is understood within a wider view of breast cancer and the emerging consensus that DCIS may not be the big ‘C’ many once thought it to be.

From Zero to Mastectomy: What I Learned and You Need to Know About Stage 0 Breast Cancer, by Jackie Fox. Gretna, Nebraska: Honyocker Press, 2010. 132pp. ISBN: 978-0578054162.

Related: “Carcinoma”: What’s in a name?

Bonnie Spanier, Emerita, University at Albany, SUNY

Bonnie Spanier received her doctorate from Harvard University in Microbiology and Molecular Genetics. While teaching biology at Wheaton College in MA, she received grants from the (U.S.) National Institutes of Health and the American Lung Association. A grant from the Bunting Institute of Radcliffe College about Women in American Society catalyzed her move to develop pioneering feminist analyses of the sciences. Her book on the influence of sexist beliefs on the content of biology, IM/PARTIAL SCIENCE: GENDER IDEOLOGY IN MOLECULAR BIOLOGY (Indiana University Press, 1995) has been praised for its significance to physicians, scientists, and feminists. Other publications analyze the errors of biological determinist claims about differences between groups. Her more recent scholarship combines her advocacy and education work as a co-founder of the Capital Region Action Against Breast Cancer (CRAAB!) with her scientific and feminist analysis of the science and politics of breast cancer activism. Professor Spanier is also an internationally recognized consultant on women’s studies and curriculum transformation, particularly in the natural sciences. She is an Emerita Professor in Women’s Studies at the University at Albany, State University of New York.

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