After the cure: The untold stories of breast cancer survivors

After the Cure: The Untold Stories of Breast Cancer Survivors

Volumn , Issue , 2010, Pages 1-183

  Abel, Emily K ^a,b   Subramanian, Saskia ^c  

^a Women's Studies Department   (United States)

^b UNIVERSITY OF CALIFORNIA   (United States)

^c UCLA Center for Culture and Health   (United States)

Author keywords

[No Author keywords available]

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EID: 84895668948     PISSN: None     EISSN: None     Source Type: Book    
DOI: None     Document Type: Book

References (201)

1. Alice Stewart Trillin, "Betting Your Life," in The Social Medicine Reader, Vol. 1, Patients, Doctors, and Illness, 2nd ed., ed. Nancy M. P. King et al. (Durham, N.C.: Duke University Press, 2005), p. 33.
2. See Chris Feudtner, "A Disease in Motion: Diabetes History and the New Paradigm of Transmuted Disease," Perspectives in Biology and Medicine, v. 39, no. 2 (Winter 1996): 158-170.
3. For useful summaries of the patient experience of illness, see Michael Bury, "The Sociology of Chronic Illness: A Review of Research and Prospects," Sociology of Health and Illness, v. 13, no. 4 (1991): 451-468
4. Julia Lawton, "Lay Experiences of Health and Illness: Past Research and Future Agendas," Sociology of Health and Illness, v. 25 (Silver Anniversary Issue 2003): 23-40
5. Janine Pierret, "The Illness Experience: State of Knowledge and Perspectives for Research," Sociology of Health and Illness, v. 25 (Silver Anniversary Issue 2003): 4-22
6. Simon J. Williams, "Chronic Illness as Biographical Disruption or Biographical Disruption as Chronic Illness? Reflections on a Core Concept," Sociology of Health and Illness, v. 22, no. 1 (2000): 40-67.
7. Studies on the aftereffects of breast cancer have grown very rapidly and are now too extensive to be listed in their entirety. For a good summary of the literature, see Institute of Medicine and National Research Council of the National Academies, From Cancer Patient to Cancer Survivor: Lost in Transition (Washington, D.C.: National Academies Press, 2001).
8. A recent study, relying on positron emission tomography (PET) scans, found evidence of a decline in brain functioning in breast-cancer survivors; that technology, however, was not available at the time of the interviews. See Daniel H. S. Silverman, Christine J. Dy Steven A. Castellon, Jasmine Lai, Betty S. Pio, Laura Abraham, Kari Waddell, Laura Peterson, Michael E. Phelps, and Patricia A Ganz, "Altered Frontocortical, Cerebellar, and Basal Ganglia Activity in Adjuvant-Treated Breast Cancer Survivors 5-10 Years after Chemotherapy," Breast Cancer Research and Treatment, v. 103, no. 3 (July 2007): 303-311.
9. See Kirstin K. Barker, The Fibromyalgia Story: Medical Authority and Women's Worlds of Pain (Philadelphia: Temple University Press, 2005)
10. Lesley Cooper, "Myalgic Encephalomyelitis and the Medical Encounter," Sociology of Health and Illness, v. 19, no. 2 (1997): 186-207
11. Susan Greenhalgh, Under the Medical Gaze: Facts and Fictions of Chronic Pain (Berkeley: University of California Press, 2001)
12. Steve Kroll-Smith and H. Hugh Floyd, Bodies in Protest: Environmental Illness and the Struggle over Medical Knowledge (New York: New York University Press, 1997)
13. Norma C. Ware, "Toward a Model of Social Course in Chronic Illness: The Example of Chronic Fatigue Syndrome," Culture, Medicine, and Psychiatry, v. 23 (1999): 303-331
14. Norma C. Ware and Arthur Kleinman, "Culture and Somatic Experience: The Social Course of Illness in Neurasthenia an Chronic Fatigue Syndrome," Psychosomatic Medicine, v. 54 (1992): 546-560.
15. Chronic fatigue syndrome recently has gained increased legitimacy as a result of findings from the Centers for Disease Control and Prevention that the disease may be caused by genetic factors. See David Tuller, "Chronic Fatigue No Longer Seen as 'Yuppie Flu,'" New York Times (July 17, 2007).
16. These accounts include Ernie Bodai and Judie Fertig Panneton, The Breast Cancer Book of Strength and Courage: Inspiring Stories to See You through Your Journey (Roseville, Calif.: Prima, 2002)
17. Kathlyn Conway, Ordinary Life: A Memoir of Illness (New York: W H. Freeman, 1997)
18. Barbara Delinsky Uplift: Secrets from the Sisterhood of Breast Cancer Survivors (New York: Washington Square Press, 2001)
19. Miriam Engelberg, Cancer Made Me a Shallower Person: A Memoir in Comics (New York: HarperCollins, 2006)
20. Nora Feller and Marcia Stevens Sherrill, Portraits of Hope: Conquering Breast Cancer: 52 Inspirational Stories of Strength (New York: Wonderland, 1998)
21. Deborah Hobler Kahane, No Less a Woman: Femininity, Sexuality, and Breast Cancer (New York: Simon and Schuster, 1990)
22. Living on the Margins: Women Writers on Breast Cancer, ed. Hilda Raz (New York: Persea, 1999)
23. Jane Lazarre, Wet Earth and Dreams: A Narrative of Grief and Recovery (Durham, N.C.: Duke University Press, 1998)
24. Marisa Acocella Marchetto, Cancer Vixen: A True Story (New York: Knopf, 2006)
25. Peggy McCarthy and Jo An Loren, Breast Cancer? Let Me Check My Schedule! (Boulder, Colo.: Westview, 1997)
26. Susan Diemert Moch, with Allan Graubard, Breast Cancer: Twenty Women's Stories: Becoming More Alive through the Experience (New York: MLN Press, 1995)
27. Marcy E. Rosenbaum and Gun M. Roos, "Women's Experiences of Breast Cancer," in Breast Cancer: Society Shapes an Epidemic, ed. Breast Cancer: Society Shapes an Epidemic (New York: Palgrave, 2002)
28. Barbara F. Stevens, Not Just One in Eight: Stories of Breast Cancer Survivors and Their Families (Deerfield Beach, Fla.: Health Communications, 2000)
29. Michelle Tocher, How to Ride a Dragon: Women with Breast Cancer Tell Their Stories (Toronto: Key Porter Books, 2002).
30. Excellent analyses of this literature include G. Thomas Couser, Recovering Bodies: Illness, Disability, and Life Writing (Madison: University of Wisconsin Press, 1997), pp. 36-80
31. Diane Price Herndl, "Our Breasts, Our Selves: Identity, Community, and Ethics in Cancer Autobiography," Signs: Journal of Women in Culture and Society, v. 32, no. 1 (Autumn 2006)
32. Laura Potts, "Publishing the Personal: Autobiographical Narratives of Breast Cancer and the Self," in Ideologies of Breast Cancer: Feminist Perspectives, ed. Ideologies of Breast Cancer: Feminist Perspectives (New York: St. Martin's, 2000), pp. 98-130.
33. Michael J. Hassett, A. James O'Malley Juliana R. Pakes, Joseph P. Newhouse, and Craig C. Earle, "Frequency and Cost of Chemotherapy-Related Serious Adverse Effects in a Population Sample of Women with Breast Cancer," Journal of the National Cancer Institute, v. 98, no. 16 (August 16, 2006): 1108-1117.
34. See also John K. Erban and Joseph Lau, "On the Toxicity of Chemotherapy for Breast Cancer - The Need for Vigilance," Journal of the National Cancer Institute, v. 98, no. 16 (August 16, 2006): 1096-1097.
35. The growing involvement of drug companies in medical research may accentuate that bias. As numerous observers note, the pharmaceutical industry tends to minimize adverse drug effects. See, for example, Marcia Angell, The Truth about the Drug Companies: How They Deceive Us and What to Do about It (New York: Random House, 2004)
36. Jerry Avorn, Powerful Medicines: The Benefits, Risks, and Costs of Prescription Drugs (New York: Vintage Books, 2005).
37. In 2003, the industry was involved in 57 percent of breast cancer studies, up from 44 percent in 1993. (Jeffrey Peppercorn, Emily Blood, Eric Winer, and Ann Partridge, "Association between Pharmaceutical Involvement and Outcomes in Breast Cancer Clinical Trials," Cancer, v. 109, no. 7 (April 1, 2007): 1239-1241.
38. See Charles E. Rosenberg, The Care of Strangers: The Rise of America's Hospital System (New York: Basic Books, 1987), p. 70.
39. Charles E. Rosenberg, "The Tyranny of Diagnosis: Specific Entities and Individual Experience," Milbank Quarterly, v. 80, no. 2 (June 2002): 237-260
40. Paul Starr, The Social Transformation of American Medicine: The Rise of a Sovereign Profession and the Making of a Vast Industry (New York: Basic Books, 1982).
41. See Marcia Meldrum, The Janus Drugs: Chronic Pain and Drug Control in 21st Century America (Berkeley: University of California Press, forthcoming).
42. See Rita Charon, Narrative Medicine: Honoring the Stories of Illness (New York: Oxford University Press, 2006)
43. Jerome Groopman, How Doctors Think (Boston: Houghton Mifflin, 2007).
44. Susan Wendell, "Old Women out of Control: Some Thoughts on Aging, Ethics, and Psychosomatic Medicine," in Mother Time: Women, Aging, and Ethics, ed. Mother Time: Women, Aging, and Ethics (Lanham, Md.: Rowman and Littlefield, 1999), p. 141.
45. Cited in Robert Jay Lifton, Super Power Syndrome: America's Apocalyptic Confrontation with the World (New York: Thunder's Mouth Press/Nation Books, 2003), p. 127.
46. See Richard A. Deyo and Donald L. Patrick, Hope or Hype: The Obsession with Medical Advances and the High Cost of False Promises (New York: AMACOM, 2005).
47. James T. Patterson, The Dread Disease: Cancer and Modern American Culture (Cambridge, Mass.: Harvard University Press, 1987), pp. 22-30.
48. Some scholars, however, argue that the reticence surrounding breast cancer has been greatly exaggerated. See Barbara Clow, "Who's Afraid of Susan Sontag? Or, the Myths and Metaphors of Cancer Reconsidered," Social History of Medicine, Vol. 14, no. 2 (2001): 293-312
49. Kirsten E. Gardner, Early Detection: Women, Cancer, and Awareness Campaigns in the Twentieth-Century United States (Chapel Hill: University of North Carolina Press, 2006).
50. Barron H. Lerner, The Breast Cancer Wars: Fear, Hope, and the Pursuit of a Cure in Twentieth-Century America (Baltimore: Johns Hopkins University Press, 2001), pp. 15-68.
51. James S. Olson, Bathsheba's Breast: Women, Cancer, and History (Baltimore: Johns Hopkins University Press, 2002), pp. 67, 89.
52. Lerner, Breast Cancer Wars, p. 142.
53. Gardner, Early Detection, pp. 86-88.
54. Terese Lasser, "I Had Breast Cancer," Coronet (April 1954): 109.
55. Lerner, Breast Cancer Wars, pp. 142-144.
56. Quoted in Lester David, "A Brave Family Faces Up to Breast Cancer," Today's Health (June 1972): 20.
57. Helga Sandburg, "Let a Joy Keep You," McCall's (November 1974): 68.
58. Betty Rollin, "The Best Years of My Life," New York Times Magazine (February 1980): 36-37.
59. Audre Lorde, The Cancer Journals (Argyle, N.H.: Spinsters Ink, 1980), p. 68.
60. Lerner, Breast Cancer Wars, p. 193.
61. Jean Zalon and Jean L. Block, I Am Whole Again: The Case for Breast Reconstruction after Mastectomy (New York: Random House, 1978), p. 32.
62. See S. Berube, L. Provencher, J. Robert, S. Jacob, N. Hebert-Croteau, J. Lemieux, T. Duchesne, and J. Brisson, "Quantitative Exploration of Possible Reasons for the Recent Improvement in Breast Cancer Survival," Breast Cancer Research and Treatment, v. 106, no. 3 (December 2007): 419-431
63. P. A. Wingo, L. A. Ries, S. L. Parker, and C. W. Heath, Jr., "Long-Term Cancer Patient Survival in the United States," Cancer Epidemiology, Biomarkers and Prevention, v. 7, no. 4 (April 1989): 271-282.
64. "Melissa Etheridge Talks about Breast Cancer: Etheridge Sings in 'GMA's' Women Rule Concert Series," ABC News, October 19, 2005.
65. Barbara Ehrenreich, "Welcome to Cancerland," in The Best American Essays, 2002, ed. The Best American Essays, 2002 (Boston: Houghton Mifflin, 2002), p. 87.
66. Susan J. Brison, Aftermath and the Remaking of a Self (Princeton, N.J.: Princeton University Press, 2002), p. 39.
67. Judith Herman, Trauma and Recovery (New York: Basic Books, 1992), p. 57.
68. Susan Bolotin, "Slash, Burn and Poison," New York Times (April 13, 1997).
69. Institute of Medicine and National Research Council, From Cancer Patient to Cancer Survivor: Lost in Transition (Washington, D.C.: National Academies Press, 2006).
70. J. E. Bower, P. A. Ganz, K. A. Desmond, J. H. Rowland, B. E. Meyerowitz, and T. R. Belin, "Fatigue in Breast Cancer Survivors: Occurrence, Correlates, and Impact on Quality of Life," Journal of Clinical Oncology, v. 18, no. 4 (2000): 743-853.
71. Daniel H. S. Silverman, Christine J. Dy, Steven A. Castellon, Jasmine Lai, Betty S. Pio, Laura Abraham, Kari Waddell, Laura Peterson, Michael E. Phelps, and Patricia A. Ganz, "Altered Frontocortical, Cerebellar, and Basal Ganglia Activity in Adjuvant-Treated Breast Cancer Survivors 5-10 Years after Chemotherapy," Breast Cancer Research and Treatment, v. 103, no. 3 (July 2007): 303-311.
72. See Marilyn Yalom, A History of the Breast (New York: Ballantine Books, 1997).
73. Diane Price Herndl, "Our Breasts, Our Selves: Identity, Community, and Ethics in Cancer Autobiography," Signs: Women in Culture and Society, v. 32, no. 1 (Autumn 2006): 221.
74. Arthur Kleinman, The Illness Narratives: Suffering, Healing, and the Human Condition (New York: Basic Books, 1988), p. 31.
75. See Michael S. Goldstein, "The Persistence and Resurgence of Medical Pluralism," Journal of Health Politics, Policy and Law, v. 29, nos. 4-5 (August-October 2004): 925-945
76. Sydney A. Halpern, "Medical Authority and the Culture of Rights," Journal of Health Politics, Policy, and Law, v. 29, nos. 4-5 (August-October 2004): 835-852
77. Bernice A. Pescosolido and Jack K. Martin, "Cultural Authority and the Sovereignty of American Medicine: The Role of Networks, Class, and Community," Journal of Health Politics, Policy, and Law, v. 29, nos. 4-5 (August-October 2004): 735-756
78. Bernice A. Pescosolido, Steven A. Tuch, and Jack K. Martin, "The Profession of Medicine and the Public: Examining Americans' Changing Confidence in Physician Authority from the Beginning of the 'Health Care Crisis' to the Era of Health Care Reform," Journal of Health and Social Behavior, v. 42 (March 2001): 1-16
79. David J. Rothman, "The Origins and Consequences of Patient Autonomy": A 25-Year Retrospective," Health Care Analysis, v. 9 (2001): 255-264
80. Keith Wailoo, Timothy Stoltzfus Jost, and Mark Schlesinger, "Professional Sovereignty in a Changing Health Care System: Reflections on Paul Starr's The Social Transformation of American Medicine," Journal of Health Politics, Policy and Law, v. 29, nos. 4-5 (August-October 2004): 557-568.
81. See Maren Klawiter, "Breast Cancer in Two Regimes: The Impact of Social Movements on Illness Experience," Sociology of Health and Illness, v. 26, no. 6 (2004): 845-874
82. Ellen Leopold, In a Darker Ribbon: Breast Cancer, Women, and Their Doctors in the Twentieth Century (Boston: Beacon, 1999)
83. Barron H. Lerner, The Breast Cancer Wars: Fear, Hope, and the Pursuit of a Cure in Twentieth-Century America (New York: Oxford University Press, 2001).
84. Lerner, Breast Cancer Wars, 140.
85. See L. Ebony Boulware, Lisa A. Cooper, Lloyd E. Ratner, Thomas A. LaVeist, and Neil R. Powe, "Race and Trust in the Health Care System," Public Health Reports, v. 118 (July-August 2004): 358-365.
86. See Vanessa Northington Gamble, "Under the Shadow of Tuskegee: African Americans and Health Care," in Tuskegee's Truths" Rethinking the Tuskegee Syphilis Study, ed. Tuskegee's Truths" Rethinking the Tuskegee Syphilis Study (Chapel Hill: University of North Carolina Press, 2000), pp. 431-442.
87. See J. Green-McKenzie, "Training African-American Residents in the Twentieth Century," Journal of the National Medical Association," v. 96, no. 23 (March 2004): 372-375
88. K. L. Moseley "After Flexner: The Challenge," Journal of the National Medical Association, v. 98, no. 9 (September 2006): 1430-1431.
89. On the preference of African American patients for physicians of the same race, see F. M. Chen, F. R. Fryer, Jr., R. L. Phillips, Jr., E. Wilson, and D. E. Pathman, "Patients' Beliefs about Racism, Preferences for Physician Race, and Satisfaction with Care," Annals of Family Medicine, v. 3, no. 2 (March-April 2005): 138-143
90. T. A. LaVeist and T. Carroll, "Race of Physician and Satisfaction with Care among African-American Patients," Journal of the National Medical Association, v. 94, no. 11 (November 2002): 937-943
91. T. A. LaVeist and A. Nuru-Jeter, "Is Doctor-Patient Race Concordance Associated with Greater Satisfaction with Care?" Journal of Health and Social Behavior, v. 43, no. 3 (September 2002): 296-306.
92. Laura A. Siminoff, Gregory C. Graham, and Nahida H. Gordon, "Cancer Communication Patterns and the Influence of Patient Characteristics: Disparities in Information-Giving and Affective Behaviors," Patient Education and Counseling, v. 62 (2006): 355-360.
93. For another account of breast cancer patients' views of medicine, see Jennifer Fosket, "Problematizing Biomedicine: Women's Constructions of Breast Cancer Knowledge," in Ideologies of Breast Cancer: Feminist Perspectives, ed. Ideologies of Breast Cancer: Feminist Perspectives (New York: St. Martin's, 2000), pp. 15-36.
94. See A. S. Elstein, "Clinical Reasoning in Medicine," in Clinical Reasoning in the Health Professions, ed. Clinical Reasoning in the Health Professions (Woburn, Mass.: Butterworth-Heinemann, 1995), pp. 49-59
95. Jerome Groopman, How Doctors Think (Boston: Houghton Mifflin, 2007), p. 276.
96. See Groopman, How Doctors Think, pp. 187-188.
97. Gina Kolata with Melody Peterson, "Hormone Replacement Study a Shock to the Medical System," New York Times (July 10, 2002): A1, A16
98. Elizabeth Siegel Watkins, The Estrogen Elixir: A History of Hormone Replacement Therapy in America (Baltimore: Johns Hopkins University Press, 2007)
99. Feifei Wei, Diana L. Miglioretti, Maureen T. Connelly, et al., "Changes in Women's Use of Hormones after the Women's Health Initiative Estrogen and Progestin Trial by Race, Education, and Income," Journal of the National Cancer Institute Monographs, v. 35 (2005): 106-112.
100. JoAnn E. Manson et al., "Estrogen Therapy and Coronary-Artery Calcification," New England Journal of Medicine (June 21, 2007): 2591-2602
101. Thomas H. Maugh II, "Doctors Change Course Again on Estrogen Therapy," Los Angeles Times (June 21, 2007): A1.
102. See Watkins, Estrogen Elixir.
103. For evidence that physicians' gender shapes relationships with patients, see Debra L. Roter and Judith Hall, Doctors Talking with Patients/Patients Talking with Doctors: Improving Communication in Medical Visits, 2nd ed. (Westport, Conn.: Praeger, 2006): 95-106.
104. See Klawiter, "Breast Cancer in Two Regimes."
105. Derjung Tarn, John Heritage, Debora A. Paternitti, Ron D. Hays, Richard L. Kravitz, and Neil S. Wenger, "Physician Communication When Prescribing New Medications," Archives in Internal Medicine, v. 166 (September 25, 2006): 1835-1862.
106. See Groopman, How Doctors Think, p. 19.
107. Susan Wendell, The Rejected Body: Feminist Philosophical Reflections on Disability (New York: Routledge, 1996), p. 122.
108. Deborah A. Stone, The Disabled State (Philadelphia: Temple University Press, 1984), p. 4.
109. On the ability of support groups to bolster patients' trust in their own knowledge, see Mark A. Chesler, "Mobilizing Consumer Activism in Health Care: The Role of Self-Help Groups," Research in Social Movements: Conflicts and Change, v. 13 (1991): 275-305
110. Steven Epstein, Impure Science: AIDS, Activism, and the Politics of Knowledge (Berkeley: University of California Press, 2006), pp. 9-10
111. Miriam J. Steward, "Expanding Theoretical Conceptualizations of Self-Help Groups," Social Science and Medicine, v. 31 (May 1990): 1057-1066
112. also see special issue of the American Journal of Community Psychology, v. 19 (October 1991).
113. See Robert A. Aronowitz, "From Myalgic Encephalitis to Yuppie Flu: A History of Chronic Fatigue Syndromes," in Framing Disease: Studies in Cultural History, ed. Framing Disease: Studies in Cultural History (New Brunswick, N.J.: Rutgers University Press, 1992), pp. 155-181
114. Lesley Cooper, "Myalgic Encephalomyelitis and the Medical Encounter," Sociology of Health and Illness, v. 19, no. 2 (1997): 186-207.
115. Roni Caryn Rabin, "A Painful Lymph Illness Often Follows Cancer," New York Times (June 5, 2007).
116. See Paula Kamen, All in My Head: An Epic Quest to Cure an Unrelenting, Totally Unreasonable, and Only Slightly Enlightening Headache (Cambridge, Mass.: Da Capo, 2005), p. 14.
117. Elliot G. Mishler, The Discourse of Medicine: Dialectics of Medical Interviews (Norwood, N.J.: Ablex, 1984).
118. In her wide-ranging diatribe against the current breast cancer movement, Barbara Ehrenreich dismisses support groups as the handmaidens of the medical establishment. Noting that "no one leaves the hospital without a brochure directing her to local support groups," Ehrenreich concludes they have "won the stamp of medical approval" because "they are no longer perceived as seditious." By way of contrast, she points to the more "ideological" self-help groups that formed the organizing tool of the women's health movement in the seventies and eighties. (Barbara Ehrenreich, "Welcome to Cancerland," in The Best American Essays, 2002, ed. Stephen Jay Gould [Boston: Houghton Mifflin, 2002], p. 74.) But those two types of groups may be more alike than she imagines. Even patients who enter support groups at a hospital's behest may discover themselves forging an oppositional stance. The members of Pat Garland's group helped to hone her anger at the doctors she encountered.
119. Institute of Medicine and National Research Council, From Cancer Patient to Survivor: Lost in Transition (Washington, D.C: National Academies Press, 2006), pp. 192-197. Although the statement about the focus of follow-up services is based on a British study, the report notes that "anecdotal evidence" suggests that the "same pattern of care" exists in the United States (ibid., p. 197).
120. Epstein, Impure Science, p. 23.
121. David M. Eisenberg, Roger B. Davis, Susan L. Ettner, Scott Appel, Sonja Wilkey, Maria Van Rompay, and Ronald C. Kessler, "Trends in Alternative Medicine Use in the United States, 1990-1997: Results of a Follow-Up National Study," JAMA, v. 280, no. 18 (November 11, 1998): 1569-1575. Although we asked women whether they had used nontraditional therapies to address their symptoms, we did not specify that the use had to have occurred within the past year. As a result, our sample cannot be directly compared to Eisenberg's respondents.
122. John A. Astin, "Why Patients Use Alternative Medicine: Results of a National Study," JAMA, v. 279, no. 19 (May 20, 1998): 1551
123. Eisenberg et al., "Trends in Alternative Medicine Use," p. 1571.
124. Astin, "Why Patients Use Alternative Medicine," p. 1550.
125. See Michael S. Goldstein, "The Persistence and Resurgence of Medical Pluralism," Journal of Health Politics, Policy and Law, v. 29, nos. 4-5 (August-October 2004): 129.
126. For an analysis of the core beliefs distinguishing alternative medicine from conventional health care, see Michael S. Goldstein, Alternative Health Care: Medicine, Miracle, or Mirage? (Philadelphia: Temple University Press, 1999), pp. 40-73.
127. See "When Trust in Doctors Erodes, Other Treatments Fill the Void," New York Times (February 3, 2006): A1, A20.
128. Eisenberg et al., "Trends in Alternative Medicine Use," p. 1573.
129. Astin, "Why Patients Use Alternative Medicine," p. 1551.
130. See Roni Caryn Rabin, "A Painful Lymph Illness Often Follows Cancer," New York Times (June 5, 2007).
131. Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (New York: Simon and Schuster, 1963), pp. 73-91.
132. See Kirsten E. Gardner, Early Detection: Women, Cancer, and Awareness Campaigns in the Twentieth-Century United States (Chapel Hill: University of North Carolina Press, 2006).
133. Audre Lorde, The Cancer Journals (San Francisco: Spinsters Ink, 1980), p. 59.
134. Sharon Batt, "'Perfect People': Cancer Charities," in The Politics of Women's Bodies: Sexuality, Appearance, and Behavior, ed. The Politics of Women's Bodies: Sexuality, Appearance, and Behavior (New York: Oxford University Press, 1998), p. 146.
135. Susan J. Brison, Aftermath: Violence and the Remaking of a Self (Princeton, N.J.: Princeton University Press, 2002), p. 73.
136. Kathy Charmaz, Good Days, Bad Days: The Self in Chronic Illness and Times (New Brunswick, N.J.: Rutgers University Press, 1991), p. 122.
137. Gina Kolata, "The Body Heretic: It Scorns Our Efforts," New York Times Week in Review (April 17, 2005), 1.
138. Judith Herman, Trauma and Recovery: The Aftermath of Violence-from Domestic Abuse to Political Terror (New York: Basic Books, 1992), p. 61.
139. See Kathy Charmaz, Good Days, Bad Days: The Self in Illness and Time (New Brunswick, N.J.: Rutgers University Press, 1991).
140. See Ann Crittenden, The Price of Motherhood: Why the Most Important Job in the World Is Still the Least Valued (New York: Metropolitan Books, 2001)
141. Joan Williams, Unbending Gender: Why Family and Work Conflict and What to Do about It (New York: Oxford University Press, 2000).
142. This is a very common response. See C. Dunkel-Schetter and C. B. Wortman, "The Interpersonal Dynamics of Cancer: Problems in Social Relationships and Their Impact on the Patient," in Interpersonal Issues in Health Care, ed. Interpersonal Issues in Health Care (New York: Academic Press, 1982), pp. 69-100.
143. For information about children's responses to their mothers' breast cancer, see B. A. Hilton and H. Elfert, "Children's Experiences with Mothers' Early Breast Cancer," Cancer Practice, v. 4, no. 2 (March-April 1996): 96-104
144. G. Forrest, C. Plumb, S. Ziebland, and A. Stein, "Breast Cancer in the Family-Children's Perceptions of Their Mother's Cancer and Its Initial Treatment: Qualitative Study," British Medical Journal (April 29, 2006): 998-1003
145. E. H. Zahlis, "The Child's Worries about the Mother's Breast Cancer: Sources of Distress in School-Age Children," Oncology Nursing Forum, v. 28, no. 6 (July 2001): 1019-1025.
146. Los Angeles Breast Health Resource Guide, 5th ed. (Los Angeles: Los Angeles County Regional Cancer Detection Partnership, n.d.), 69-73. Some offer multiple groups; some also furnish separate services for African American, Chinese, Japanese, Korean, Latina, Native American, and lesbian women.
147. See Margaret H. Vickers, "The 'Invisibly' Chronically Ill as Unexamined Organizational Fringe-Dwellers: Voices of Ambiguity, Confusion, and Uncertainty," Sociology of Work, v. 9 (2000): 3-21.
148. See Julia Lawton, "Lay Experiences in Health and Illness: Past Research and Future Agendas," Sociology of Health and Illness, v. 25 (Silver Anniversary Issue 2003): 23-40.
149. Institute of Medicine and National Research Council, From Cancer Patient to Cancer Survivor: Lost in Transition (Washington, D.C.: National Academies Press, 2006), p. 367.
150. See Melissa Harris-Lacewell, "No Place to Rest: African American Political Attitudes and the Myth of Black Women's Strength," Women and Politics, v. 23, no. 3 (2001): 1-33.
151. See H. Bosma, M. G. Marmot, H. Hemingway, A. C. Nicholson, E. Brunner, and S. A. Stansfeld, "Low Job Control and Risk of Coronary Heart Disease in Whitehall II (Prospective Cohort) Study," British Medical Journal, v. 314 (February 22, 1997): 558-565
152. S. Cohen, W. J. Doyle, and A. Baum, "Socioeconomic Status Is Association with Stress Hormones," Psychosomatic Medicine, v. 68, no. 3 (May-June 2006): 414-420
153. H. Kuper and M. Marmot, "Job Strain, Job Demands, Decision Latitude, and Risk of Coronary Heart Disease within the Whitehall II Study," Journal of Epidemiological Community Health, v. 57, no. 2 (February 2003): 147-153
154. A. Steptoe, S. Kunz-Ebrecht, N. Owen, P. J. Feldman, G. Willemsen, C. Kirschbaum, and M. Marmot, "Socioeconomic Status and Stress-Related Biological Responses over the Working Day," Psychosomatic Medicine, v. 65, no. 3 (May-June 2003): 461-470.
155. See D. V. Ah, D. H. Kang, and J. S. Carpenter, "Stress, Optimism, and Social Support: Impact on Immune Responses in Breast Cancer," Research in Nursing and Health, v. 30, no. 1 (February 2007): 72-83
156. B. L. Andersen, W. B. Farrar, D. Golden-Kreutz, L. A. Kutz, R. MacCallum, M. E. Courtney, and R. Glaser, "Stress and Immune Responses after Surgical Treatment for Regional Breast Cancer," Journal of the National Cancer Institute, v. 90, no. 1 (January 7, 1998): 30-36.
157. See Ruth O'Brien, Crippled Justice: The History of Modern Disability Policy in the Workplace (Chicago: University of Chicago Press, 2001), p. 177.
158. See John Leland, "When Even Health Insurance Is No Safeguard," New York Times (October 23, 2005): 1, 24.
159. See Institute of Medicine and National Research Council, From Cancer Patient to Cancer Survivor, p. 391.
160. Arthur W. Frank, The Wounded Storyteller: Body, Illness, and Ethics (Chicago: University of Chicago Press, 1995), p. 115.
161. Anne Hunsaker Hawkins, "A Change of Heart: The Paradigm of Regeneration in Medical and Religious Narrative," Perspectives in Biology and Medicine, v. 33, no. 4 (Summer 1990): 556.
162. Daniel J. Wilson, "Covenants of Work and Grace: Themes of Recovery and Redemption in Polio Narratives," Literature and Medicine, v. 13, no. 1 (Spring 1994): 22-41.
163. Diane Price Herndl, "Our Breasts, Our Selves: Identity, Community, and Ethics in Cancer Autobiographies," Signs: Journal of Women in Culture and Society, v. 32, no. 1 (Autumn 2006): 224.
164. Herndl draws primarily on four books: Breast Cancer? Let Me Check My Schedule, ed. Peggy McCarthy and Jo An Loren (Boulder, Colo.: Westview, 1997)
165. The Breast Cancer Book of Strength and Courage: Inspiring Stories to See You through Your Journey, ed. Judie Fertig Panneton and Ernie Bodai (Roseville, Calif.: Prima, 2002)
166. Rita Busch, Judy Thibault Klevins, Daena Kluegel, Jana Morgana, Helen Rash, Katherine Traynham, and Lesley Tyson, Can You Come Here Where I Am? The Poetry and Prose of Seven Breast Cancer Survivors (Manassas, Va.: E. M. Press, 1998)
167. Hilda Raz, Living on the Margins: Women Writers on Breast Cancer (New York: Persea, 1999).
168. Barbara Ehrenreich, "Welcome to Cancerland," in The Best American Essays, 2002, ed. The Best American Essays, 2002 (Boston: Houghton Mifflin, 2002), p. 78.
169. Kathlyn Conway, Ordinary Life: A Memoir of Illness (New York: W H. Freeman, 1997), p. 1.
170. Frank argues that an essential feature of the "quest narrative" is the development of a "communicative body," which "constructs its humanity in relation to other bodies" (Frank, Wounded Storyteller, p. 49). That argument, however, rests on the assumption that the ill person previously had been relatively detached from others and thus probably accords better with men's experiences than with women's. The end result of the "quests" of many women we interviewed was separation rather than attachment.
171. In his memoir of life after severe brain damage, writer Floyd Skloot similarly reflects on the benefits of savoring the present: "I have come to pay tremendous value on the intensity and power of the moment." In the Shadow of Memory (Lincoln: University of Nebraska Press, 2003), p. 41.
172. See B. A. Brenner, "Sister Support: Women Create a Breast Cancer Movement," in Breast Cancer: Society Shapes an Epidemic, ed. Breast Cancer: Society Shapes an Epidemic (New York: St. Martin's, 2000)
173. Maren Klawiter, "Breast Cancer in Two Regimes: The Impact of Social Movements on Illness Experience," Sociology of Health and Illness, v. 26, no. 6 (2004): 845-874
174. Jennifer R. Myhre, "The Breast Cancer Movement: Seeing beyond Consumer Activism," Journal of the American Medical Women's Association, v. 54, no. 1 (Winter 1999): 29-33
175. National Breast Cancer Coalition website, www.natlbcc.org.
176. The literature on black women and breast cancer is extensive. Selected studies include A. Ghafoor, A. Jemal, E. Ward, V. Cokkinides, R. Smith, and M. Thun, "Trends in Breast Cancer by Race and Ethnicity," CA: A Cancer Journal for Clinicians, v. 54, no. 3 (2003): 3422-3455
177. I. Jatoi, H. Becher, and C. R. Leake, "Widening Disparity in Survival between White and African-American Patients with Breast Carcinoma Treated in the U.S. Department of Defense Healthcare System," Cancer, v. 98, no. 5 (September 1, 2003): 894-899
178. S. A. Joslyn and M. M. West, "Racial Differences in Breast Carcinoma Survival," Cancer, v. 88, no. 1 (January 1, 2000): 114-123
179. Donald R. Lannin, Holly F. Matthews, Jim Mitchell, Melvin S. Swanson, Frances H. Swanson, and Maxine S. Edwards, "Influence of Socioeconomic and Cultural Factors on Racial Differences in Late-Stage Presentation of Breast Cancer," Journal of the American Medical Association, v. 279 (1998): 1801-1807
180. E. T. Johnson, "Breast Cancer Racial Differences before Age Forty-Implications for Screening," Journal of the National Medical Association, v. 94, no. 3 (March 2002): 149-156
181. M. Sarker, I. Jatoi, and H. Becher, "Racial Differences in Breast Cancer Survival in Women under Age Sixty," Breast Cancer Research and Treatment, v. 106, no. 1 (November 2007): 135-141.
182. Cited in Frank, Wounded Storyteller, p. 35.
183. The phrase is James T. Patterson's in The Dread Disease: Cancer and Modern American Culture (Cambridge, Mass.: Harvard University Press, 1987), p. 13.
184. Rita Charon, Narrative Medicine: Honoring the Stories of Illness (New York: Oxford University Press, 2006), p. 65.
185. Jane Gross, "Chemotherapy Fog Is No Longer Ignored as Illusion," New York Times (April 29, 2007), p. 1.
186. See, e.g., Julie K. Silver, After Cancer Treatment: Heal Faster, Better, Stronger (Baltimore: Johns Hopkins University Press, 2006).
187. See John E. Robison, Laurent Perreard, and Philip S. Bernard, "State of the Science: Molecular Classifications of Breast Cancer for Clinical Diagnostics," Clinical Biochemistry, v. 37 (2004): 572-578.
188. See J. A. Sparano, "TAILORx: Trial Assigning Individualized Options for Treatment (Rx)," Clinical Breast Cancer, v. 7, no. 4 (October 2006): 347-350.
189. See Kim Irwin, "Living after Cancer," UCLA Medicine (Winter 2007): 12-17.
190. Jerome Groopman, How Doctors Think (Boston: Houghton Mifflin, 2007), pp. 1-26.
191. Robert A. Aronowitz, Making Sense of Illness: Science, Society, and Disease (Cambridge: Cambridge University Press, 1998), p. 175.
192. Groopman, How Doctors Think, p. 6.
193. See William T. Branch, David Kern, Paul Haidet, Peter Weissmann, Catherine F. Gracey, Gary Mitchell, and Thomas Inui, "Teaching the Human Dimensions of Care in Clinical Settings," Journal of the American Medical Association, v. 286, no. 9 (September 5, 2001): 1067-1074.
194. See Marguerite Holloway "When Medicine Meets Literature," Scientific American.com (April 25, 2005).
195. See Simi Linton, Claiming Disability: Knowledge and Identity (New York: New York University Press, 1998)
196. Paul K. Longmore, Why I Burned My Book and Other Essays on Disability (Philadelphia: Temple University Press, 2003)
197. Rosemarie Garland Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature (New York: Columbia University Press, 1997).
198. See Rick Baldoz, Charles Koeber, and Philip Kraft, "Making Sense of Work in the Twenty-First Century," in The Critical Study of Work: Labor, Technology, and Global Production, ed. The Critical Study of Work: Labor, Technology, and Global Production (Philadelphia: Temple University Press, 2001)
199. Juliet B. Schor, The Overworked American: The Unexpected Decline of Leisure (New York: Basic Books, 1991).
200. See Rosemarie Garland-Thomson, "Feminist Disability Studies," Signs: Journal of Women in Culture and Society, v. 30, no. 2 (2005).
201. See also Erving Goffman, Stigma: Notes on the Management of Spoiled Identity (New York: Simon and Schuster, 1963).