Book Review (Social Service Review, Sept 2006)
Breast Cancer: Daughters Tell Their Stories.
By Julianne S. Oktay. New York: Haworth, 2005. Pp. 430. $59.95 (cloth); $34.95 (paper).

In his 1971 State of the Union address, President Richard M. Nixon declared war on cancer and earmarked $100 million to launch an intensive campaign to find a cure. Nevertheless, few insights into cancer's etiology and course accrued in the final 29 years of the twentieth century. In fact, the incidence and mortality rates for a number of cancers were higher in 2002 than they were in 1971, and cancer remains the second leading cause of death in the United States (American Cancer Society, "Breast Cancer Facts and Figures 2003–2004," report no. 8610.03 [American Cancer Society, Atlanta, 2003]). One would be hard-pressed to claim a victory in the nation's war on cancer.

Advances in science over the last few years, most notably the mapping and sequencing of the human genome, show great promise for medicine's understanding of the causes of cancer and ability to treat it. Yet decades of ambiguity and misunderstanding about cancer have negatively affected the nation's psyche and tempered its optimism; poor understanding of etiology and course are at the base of this fear. Especially pronounced are the effects of this ambiguity on patients, caregivers, family members, and other loved ones who have directly experienced the disease. Those groups must not only bear the financial and emotional burden of a major illness but must also operate without a clear understanding of what to expect from the disease. In comparing current societal views of cancer to conceptions of tuberculosis (TB) in the last century, Susan Sontag writes, "Now it is cancer's turn to be the disease that doesn't knock before it enters, cancer that fills the role of an illness experienced as a ruthless, secret invasion—a role it will keep until, one day, its etiology becomes as clear and its treatment as effective as those of TB have become" (Illness as Metaphor and AIDS and Its Metaphors [New York: Picador, 1990], 5).

Julianne Oktay's recently published book provides entrée into the experiences of daughters of women with breast cancer, a group with much at stake. They must deal with impending loss in an atmosphere of fear and uncertainty about the disease and its course. Alarmingly, the incidence of breast cancer was higher in 2002 than it was in 1971 (age adjusted, 135 per 100,000 in 2002 compared with 98 per 100,000 in 1973; Brenda K. Edwards, Martin L. Brown, Phyllis A. Wingo, Holly L. Howe, Elizabeth Ward, Lynn A. G. Ries, Deborah Schrag, et al., "Annual Report to the Nation on the Status of Cancer, 1975–2002, Featuring Population-Based Trends in Cancer Treatment," Journal of the National Cancer Institute 97, no. 19 [2005]: 1407–27). In addition, although scientists are aware that 70–80 percent of breast cancers are due to sporadic or acquired mutations, and not hereditary, little is known about how these mutations occur. Research establishes links to some health behaviors and environmental exposures, but an integrated model of the determinants of breast cancer remains beyond reach. Yet the stakes are high. The National Cancer Institute recently estimated that one in eight women in the United States will develop the disease during her lifetime (Lynn A. G. Ries, Milton P. Eisner, Carol L. Kosary, Benjamin F. Hankey, Barry A. Miller, Limin X. Clegg, Angela B. Mariotto, Eric J. Feuer, and Brenda K. Edwards, eds., SEER Cancer Statistics Review, 1975–2002 [Bethesda, MD: National Cancer Institute, 2005]).

Oktay takes a qualitative approach to understanding the effects of mothers' breast cancer on daughters, interviewing 41 women recruited through referral and advertisements. She argues convincingly that although a fair amount of research has been aimed at understanding cancer's effects on families, very few studies focus specifically on the daughters of women with breast cancer. Indeed, a review of the National Library of Medicine's electronic index of journal articles identifies only seven articles published on the topic between 2003 and 2006. Five of the seven assessed either specific psychological outcomes (e.g., post-traumatic stress disorder [PTSD]) or daughters' perceptions of their own breast cancer risk. Authors of the sixth article (Maureen Davey, Laurel Gulish, Julie Askew, Karen Godette, and Nicole Childs, "Adolescents Coping with Mom's Breast Cancer: Developing Family Intervention Programs," Journal of Marital and Family Therapy 31, no. 2 [2005]: 247–58) develop guidelines for family intervention programs by conducting focus groups of female and male adolescents whose mothers had breast cancer. In the seventh article, Victoria Raveis and Sheindy Pretter interview daughters of mothers with breast cancer to determine the effect of caregiving on daughters' psychological functioning and the mother-daughter relationship ("Existential Plight of Adult Daughters following Their Mother's Breast Cancer Diagnosis," Psycho-Oncology 14, no. 1 [2005]: 49–60).

Like Oktay, Raveis and Pretter aim to determine the consequences of mothers' breast cancer on daughters, but they focus on the consequences of caregiving. As such, they interview adult daughters (ages 21 to 62 years) caring for mothers. Oktay instead focuses on daughters who were children, adolescents, or young adults at the time of their mothers' diagnosis and whose mothers were under 50 years of age when diagnosed. This distinguishes her study and, to my mind, renders it more valuable. Daughters who lose their mothers early in life face more developmental milestones, such as puberty, and social choices, such as whether to have children, without the advice and support of their mothers. Moreover, as Oktay ably demonstrates, young women's relationships with their fathers might well be altered irreparably by their mothers' illness and death. Also, Oktay's group of young daughters is more susceptible to the disease itself, because women who develop breast cancer early in life are more likely to have the heritable form (Katherine L. Nathanson, Richard Wooster, and Barbara L. Weber, "Breast Cancer Genetics: What We Know and What We Need," Nature Medicine 7, no. 5 [2001]: 552–56).

Oktay's study, which was funded by the National Cancer Institute, is extraordinary for its rich conceptualization and execution. The book provides a concise yet nuanced exposition of data extracted from interviews with daughters, doing so in a manner that is complete without being tedious. This is accomplished in part by effectively organizing results around themes that emerged during initial review of transcribed interviews. Oktay first divides the interviews according to the outcome of mothers' cancer. She focuses more on the group of young women whose mothers died because they faced more problems for a longer period of time. Oktay further divides results for both groups by daughter's age at the time of her mother's diagnosis (age cohorts include childhood, young adolescence, older adolescence, and young adulthood). Clear patterns emerge in the data on women whose mothers died, and Oktay identifies phases within each age group. The phases roughly correspond to the periods before the mother's diagnosis of breast cancer, after the diagnosis, immediately after the mothers' death, and the years following the death.

Across the four age cohorts, the responses and needs of women at each phase are unique in a number of respects, although Oktay observes some inevitable overlap. This knowledge is very useful in designing interventions, guiding clinical practice, and establishing policies. Unfortunately, only African American and white women are represented in the sample; most participants are middle or upper-middle class with college or graduate educations. Women in the helping professions also seem to be overrepresented. One shortcoming of the work is the range of time between participants' experiences and Oktay's study. Because she provides few dates, it is not possible to situate daughters' stories in time. In one instance, a participant in her fifties recalls experiences that occurred in the 1960s. Others are describing things that happened in the year or two before the study. If the reader were able to connect daughters' experiences with specific dates, it would be possible to ground responses in the medical and social climate of the time. I found myself wishing I had the information.

In reading the book while traveling, I was taken by the number of women who noticed the title and asked me about it because they had not seen other treatments of daughters' experiences with their mothers' breast cancer. It struck me that while I initially imagined it as a resource for social work practitioners and a text for teaching health social work practice courses, the book clearly has broader appeal. I also realized that I feel comfortable recommending it to women with a range of backgrounds. This seems to be Oktay's gift: to prepare a scholarly work that is nonetheless compellingly readable.


Sarah Gehlert
University of Chicago


www.breastcancerdaughters.com