Pandora's DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree

by Lizzie Stark

  Of course, taking estrogen blockers: “Hormone Therapy for Breast Cancer,” National Cancer Institute, National Institutes for Health, accessed March 14, 2014, www.cancer.gov/cancertopics/factsheet/Therapy/hormone-therapy-breast.

  a little hormonal birth control: “Oral Contraceptives Reduce Long-Term Risk of Ovarian Cancer,” National Cancer Institute, National Institutes for Health, accessed March 14, 2014, www.cancer.gov/cancertopics/prevention/ovarian/oral-contraceptives.

  Chapter 9: Barbie Girls

  “If she would have seen Newt Gingrich …”: Gingrich allegedly asked his first wife for a divorce while she was recovering from cancer treatment. Gingrich has disputed this claim. Jeff Zeleny, “On the Stump, Gingrich Puts Focus on Faith,” New York Times, February 26, 2011, A1. Helen Kennedy, “Report: Newt Gingrich’s Divorce Papers Contradict His Claim Wife Jackie Wanted Split,” New York Daily News, December 26, 2011.

  Barbie creator Ruth Handler: Olson, Bathsheba’s Breast, 235 (quoting from Handler’s autobiography).

  Her doctor told her: Stocking detail: Elaine Woo, “Ruth Handler, Inventor of Barbie Doll, Dies at 85,” Los Angeles Times, April 28, 2002, A1.

  Handler stood, confused: Veronica Horwell, “Obituary: Ruth Handler: Creator of the Doll Whose Changing Style Defined Generations of Young Women,” Guardian, May 2, 2002; Woo, “Ruth Handler, Inventor.”

  “Every woman knows …”: Olson, Bathsheba’s Breast, 235.

  So Handler decided to remedy: Woo, “Ruth Handler, Inventor”; Horwell, “Obituary: Ruth Handler.”

  The surprisingly long history: Surajit Bhattacharya, “Sushruta—Our Proud Heritage,” Indian Journal of Plastic Surgery 42, no. 2 (July–December 2009): 223–25; V. K. Raju, “Susruta of Ancient India,” Indian Journal of Ophthalmology 51 (2003): 119–22.

  He also had a method: Elizabeth Haiken, Venus Envy: A History of Cosmetic Surgery (Baltimore: Johns Hopkins University Press, 1997), 5; Bhattacharya, “Sushruta.”

  The forehead flap: Haiken, Venus Envy, 5.

  Gasparo Tagliacozzi, who was familiar: Ibid.; Jacobson, Cleavage, 172.

  The war yielded an unprecedented: Haiken, Venus Envy, 29.

  Columbia and Johns Hopkins joined in: Ibid., 30.

  “miracle man of the Western front”: Ibid.

  Harold Delf Gillies, one of the fathers: Ibid., 31; Michael Mosley, “How Do You Fix a Face That’s Been Blown Off by Shrapnel?,” BBC, accessed March 14, 2014, www.bbc.co.uk/guides/zxw42hv.

  During the war and after: Haiken, Venus Envy, 34.

  By the beginning of World War II: Ibid., 34–35.

  A month later in Atlantic City: Ibid., 17–18.

  Between the Middle Ages and the Renaissance: Yalom, History of the Breast, 54.

  Upper-class women could afford wet nurses: Ibid., 69–70.

  As a 1988 Wall Street Journal article: Ibid., 180–81 (citing a December 2, 1988, piece).

  By the 1950s: Jacobson, Cleavage, 108.

  The “breast fetish” and breast-centric fashions: Yalom, History of the Breast, 136, 137–138. The nightmare line is a paraphrase of Yalom.

  The fad for big breasts: Haiken, Venus Envy, 237.

  Psychiatrists described typical enhancement: Jacobson, Cleavage, 113.

  Flat-chested women suffered: Haiken, Venus Envy, 271.

  “the idea that surgery …”: Jacobson, Cleavage, 116.

  Dramatic physical operations could cure: Haiken, Venus Envy, 135.

  In 1895, Heidelberg surgeon Vincenz Czerny: Jacobson, Cleavage, 48; Olson, Bathsheba’s Breast, 115.

  Louis Ombrédanne described a technique: Jacobson, Cleavage, 57–58.

  Czerny’s experimentation with fat: Haiken, Venus Envy, 236.

  By the 1940s, transplants: Ibid., 236.

  Surgeons in the early to mid-1900s: Jacobson, Cleavage, 56; S. Bondurant, V. Ernster, and R. Herdman, eds., Safety of Silicone Breast Implants (Washington, DC: National Academies Press, 1999), 21, www.nap.edu/openbook.php?record_id=9602&page=21.

  Paraffin comes in two varieties: Jacobson, Cleavage, 52.

  Gersuny diluted his melted: Ibid., 52–53.

  By the turn of the century, doctors injected: Ibid., 35; Haiken, Venus Envy, 21.

  This turned out to be a terrible idea: Jacobson, Cleavage, 54–55.

  Paraffin wasn’t the only injectable: Anne S. Kasper and Susan J. Ferguson, Breast Cancer: Society Shapes an Epidemic (New York: St. Martin’s Press, 2000) 58–59.

  As the story goes: Jacobson, Cleavage, 80–81; Haiken, Venus Envy, 246.

  In 1946 American doctor Harvey D. Kagan: Kasper and Ferguson, Breast Cancer, 59; Haiken, Venus Envy, 247.

  According to a report by the National Academy of Sciences: Bondurant et al., Safety of Silicone, 22.

  Famed San Francisco topless dancer Carol Doda: Haiken, Venus Envy, 247–248.

  However, these studies looked at low-volume: Jacobson, Cleavage, 81; Haiken, Venus Envy, 247.

  It also got into the lymphatic system: Haiken, Venus Envy, 249.

  If accidentally injected into the blood: Kasper and Ferguson, Breast Cancer, 60.

  The FDA had classified silicone: Everett R. Holles, “Silicone Infections Traced to Tijuana,” New York Times, July 15, 1974, 30; Walter Oeters and Victor Fornasier, “Complications from Injectable Materials Used for Breast Augmentation,” Canadian Journal of Plastic Surgery 17, no. 3 (Fall 2009): 89–96.

  silicone butt injections: Lizzie Crocker and Caitlin Dickson, “Illegal Butt Injections Are on the Rise and Women Are at Risk,” Daily Beast, October 13, 2012; Laura J. Nelson, “As Demand for Illegal Silicone Injections Grows, So Do Deaths,” Los Angeles Times, October 9, 2012; Willard L. Cooper, “Buttloads of Pain: Illegal Ass Enhancements May Be America’s Next Health Epidemic,” Vice, January 7, 2014, accessed April 16, 2014, www.vice.com/read/buttloads-of-pain-0000190-v21n1.

  Although surgeons tried the war-produced materials: Jacobson, Cleavage, 62.

  A study published a year later: Ibid., 62–63.

  Women had problems with drainage: Ibid., 64.

  Surgical resident Frank J. Gerow: John A. Byrne, Informed Consent: A Story of Personal Tragedy and Corporate Betrayal … Inside the Silicone Breast Implant Crisis (McGraw Hill, 1997), 45–48.

  Thirty years later: Kasper and Ferguson, Breast Cancer, 61.

  Dow Corning launched the Silastic: Leopold, Darker Ribbon, 264.

  The Silastic model featured: Haiken, Venus Envy, 256; Byrne, Informed Consent, 48.

  Soon, implants of different shapes: Haiken, Venus Envy, 256.

  In 1976, Congress passed the Medical Device Amendments: Jacobson, Cleavage, 16–19; “Classification of Devices Intended for Human Use,” United States Code, 2010 edition, 12 U.S.C., Title 21, Chapter 9, Part A, Section 360c (Washington, DC: US Government Printing Office), www.gpo.gov/fdsys/pkg/USCODE-2010-title21/html/USCODE-2010-title21-chap9.htm.

  Even more alarming, case reports: Jacobson, Cleavage, 99–101, 22–24.

  Medical societies suspected: Ibid., 25–33.

  Augmentation patients would comprise: Ibid., 46–47; Haiken, Venus Envy, 230–231.

  the panel’s decision left out: Haiken, Venus Envy, 231.

  In 1998, Dow settled: Yalom, History of the Breast, 237; “Chronology of Silicone Breast Implants,” Frontline: Breast Implants on Trial, February 27, 1996, accessed March 14, 2014, www.pbs.org/wgbh/pages/frontline/implants/cron.html.

  the FDA cautions: However, in January 2011 the FDA announced that there is a “possible association” between breast implants and anaplastic large-cell lymphoma, which isn’t breast cancer, but rather is cancer of the scar capsule that encloses implants. Only about sixty women worldwide have developed this cancer, out of five to ten million women with implants—less than 0.001%. For more on the conclusions that breast implants are safe and do not cause any disease, despite their common secondary complications such as capsular contracture, rupture, and replacement, see: S. Bondurant, et al., Safety of Silicone Breast Implants; “Ris
ks of Breast Implants,” U.S. Food and Drug Administration, September 25, 2013, accessed March 14, 2014, www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/ImplantsandProsthetics/BreastImplants/ucm064106.htm.

  Fourteen years after the original ban: “Regulatory History of Breast Implants in the U.S.,” U.S. Food and Drug Administration, September 25, 2013, accessed March 14, 2014, www.fda.gov/MedicalDevices/ProductsandMedicalProcedures/ImplantsandProsthetics/BreastImplants/ucm064461.htm.

  “there exists a standard type of breast …”: Jack Penn, “A Perspective and Technique for Breast Reduction,” in Robert M. Goldwyn, ed., Plastic and Reconstructive Surgery of the Breast (Boston: Little Brown, 1976), 184 (quoted from Jacobsen, Cleavage, 94).

  One surgeon in the textbook: Jacobson, Cleavage, 94 (quoting Simon Fredericks, “Management of Mammary Hypoplasia,” Plastic and Reconstructive Surgery of the Breast, 395).

  Frank Gerow, half of the team: Florence Williams, Breasts: A Natural and Unnatural History (New York: W. W. Norton and Company, 2012), 71.

  Chapter 10: Captain Kirk and Doctor Spock

  There are oblong incisions: S. Kinoshita, et al., “Clinical comparison of four types of skin incisions for skin-sparing mastectomy and immediate breast reconstruction,” Surgery Today, September 17, 2013, accessed July 3, 2014, http://www.ncbi.nlm.nih.gov/pubmed/24043394; Grant W. Carlson, “Technical Advances in Skin Sparing Mastectomy,” International Journal of Surgical Oncology 2011, accessed July 3, 2014, http://www.hindawi.com/journals/ijso/2011/396901/; P.M. Peyser, et al., “Ultra-conservative skin-sparing ‘keyhole’ mastectomy and immediate breast and areola reconstruction,” Annals of the Royal College of Surgeons of England 82, no.4 (July 2000): 227–35, accessed July 3, 2014, http://www.ncbi.nlm.nih.gov/pubmed/10932655; S.L. Spear, M.E. Carter, and K. Schwartz, “Prophylactic mastectomy: indications, options, and reconstructive alternatives,” Plastic and reconstructive surgery 115, no. 3 (March 2005): 891–909, accessed July 3, 2014, http://www.ncbi.nlm.nih.gov/pubmed/15731693.

  Chapter 11: Ta-Ta to Tatas

  “I suspect that cancer doesn’t give a rat’s ass …”: Molly Ivins, “Who Needs Breasts, Anyway?,” Time, February 10, 2002.

  Emotionally, I was laid out: I have previously written about the “good-bye to boobs” party and the run-up to surgery here: Lizzie Stark, “Goodbye to My Breasts,” Daily Beast, April 24, 2010, http://www.thedailybeast.com/articles/2010/04/24/good-bye-to-my-breasts.html.

  She is from the Reach to Recovery program: “About RRI,” Reach to Recovery International, accessed March 14, 2014, www.reachtorecoveryinternational.org/about-rri/.

  Chapter 12: Heffalumpless

  When a 2010 study comes out: Steven A Narod, Kelly Metcalfe, Shelley Gershman, Parviz Ghadirian, et al. “Contralateral Mastectomy and Survival after Breast Cancer in Carriers of BRCA1 and BRCA2 Mutations: Retrospective Analysis,” BMJ (February 11, 2014): 348:g226; L. C. Hartmann, T. A. Sellers, D. J. Schaid, et al., “Efficacy of Bilateral Prophylactic Mastectomy in BRCA1 and BRCA2 Gene Mutation Carriers,” Journal of the National Cancer Institute 93, no. 21 (2001): 1633–37; T. R. Rebbeck, T. Friebel, H. T. Lynch, et al., “Bilateral Prophylactic Mastectomy Reduces Breast Cancer Risk in BRCA1 and BRCA2 Mutation Carriers: The PROSE Study Group,” Journal of Clinical Oncology 22, no. 6 (2004): 1055–62; T. C. van Sprundel, M. K. Schmid, R. A. E. M. Tollenaar, et al., “Risk Reduction of Contralateral Breast Cancer and Survival after Contralateral Prophylactic Mastectomy in BRCA1 or BRCA2 Mutation Carriers,” British Journal of Cancer 93, no. 3 (2005): 287–92; D. G. R. Evans, A. D. Baildam, A. Howell, et al., “Risk Reducing Mastectomy: Outcomes in 10 European Centres,” Journal of Medical Genetics 46, no. 4 (2009): 254–58; S. M. Domchek, T. M. Friebel, T. R. Rebbeck, et al., “Association of Risk-Reducing Surgery in BRCA1 or BRCA2 Mutation Carriers with Cancer Risk and Mortality,” Journal of the American Medical Association 304, no. 9 (2010): 967–75; A. Finch, M. Beiner, S. A. Narod, et al., “Salpingo-oophorectomy and the Risk of Ovarian, Fallopian Tube, and Peritoneal Cancers in Women with a BRCA1 or BRCA2 Mutation,” Journal of the American Medical Association 296, no. 2 (2006): 185–92; S. L. Ingham, M. Sperrin, and D. G. Evans, “Risk-Reducing Surgery Increases Survival in BRCA1/2; Mutation Carriers Unaffected at Time of Family Referral,” Breast Cancer Research and Treatment 142, no. 3 (December 2013): 611–18; R. Calderon-Margalit and O. Paltiel, “Prevention of Breast Cancer in Women Who Carry BRCA1 or BRCA2 Mutations: A Critical Review of the Literature,” International Journal of Cancer 112, no. 3 (November 10, 2004): 357–64.

  As with all the BRCA risk numbers, research: M. C. King, et al., “Breast and Ovarian Cancer Risks Due to Inherited Mutations in BRCA1 and BRCA2,” Science 302, no. 5645 (October 24, 2003): 643–46; A. Antoniou, P. D. P. Pharoah, et al., “Average Risks of Breast and Ovarian Cancer Associated with BRCA1 or BRCA2 Mutations Detected in Case Series Unselected for Family History: A Combined Analysis of 22 Studies,” American Journal of Human Genetics 72, no. 5 (May 2003): 1117–30; Sining Chen and Giovanni Parmigiani, “Meta-Analysis of BRCA1 and BRCA2 Penetrance,” Journal of Clinical Oncology 25 (2007): 1329–33.

  typical woman’s lifetime risk: “What Are the Key Statistics about Ovarian Cancer?,” American Cancer Society, February 6, 2014, accessed March 14, 2014, www.cancer.org/cancer/ovariancancer/detailedguide/ovariancancer-key-statistics.

  Even though it’s only: “Ovarian Cancer Statistics,” Centers for Disease Control and Prevention, October 23, 2013, accessed March 14, 2014, www.cdc.gov/cancer/ovarian/statistics/.

  The problem is that only about 20 percent: “Can Ovarian Cancer Be Found Early?” American Cancer Society, February 6, 2014, accessed March 14, 2014, www.cancer.org/cancer/ovariancancer/detailedguide/ovariancancer-detection.

  And the likelihood of a woman living: “SEER Stat Fact Sheets: Ovary Cancer,” Surveillance, Epidemiology and End Results Program; “Table 21.9: Cancer of the Ovary (Invasive),” Surveillance, Epidemiology and End Results Program, National Cancer Institute, National Institutes of Health, accessed March 14, 2014, http://seer.cancer.gov/csr/1975_2010/browse_csr.php?sectionSEL=21&pageSEL=sect_21_table.09.html; “Survival Rates for Ovarian Cancer, by Stage,” American Cancer Society, February 6, 2014, accessed March 14, 2014, www.cancer.org/cancer/ovariancancer/detailedguide/ovariancancer-survival-rates.

  The symptoms are a hypochondriac’s: Mayo Clinic Staff, “Ovarian Cancer: Symptoms,” Mayo Clinic, November 10, 2012, accessed March 14, 2014, www.mayoclinic.com/health/ovariancancer/DS00293/DSECTION=symptoms; “Health Guide: Ovarian Cancer,” New York Times, November 17, 2012, accessed March 14, 2014, http://health.nytimes.com/health/guides/disease/ovariancancer/; “Symptoms of Ovarian Cancer,” Centers for Disease Control and Prevention, November 29, 2012, accessed March 14, 2014, www.cdc.gov/cancer/ovarian/basic_info/symptoms.htm; “Symptoms of Ovarian Cancer,” National Ovarian Cancer Coalition, accessed March 14, 2014, www.ovarian.org/symptoms.php.

  To reduce your risk of ovarian cancer: “Ovarian Cancer Prevention,” National Cancer Institute, National Institutes of Health, accessed March 14, 2014, www.cancer.gov/cancertopics/pdq/prevention/ovarian/Patient/page3.

  The National Comprehensive Cancer Network: “About NCCN,” National Comprehensive Cancer Network, accessed March 14, 2014, www.nccn.org/about/default.aspx; Mary Daly, et al., “Genetic/Familial High-Risk Assessment.”

  neither of those tools: Mary Daly, et al., Genetic/Familial High-Risk Assessment,” HBCO-A, 1 of 2.

  Of those ten surgeries: “Promising Screening Tool for Early Detection of Ovarian Cancer,” MD Anderson Cancer Center, August 15, 2013, accessed March 14, 2014, www.mdanderson.org/newsroom/news-releases/2013/ca-125-screening-tool-for-ovarian-cancer.html.

  Oophorectomy removes the body’s main sources: Mary Daly, et al., “Genetic/Familial High-Risk Assessment.”

  Masha Gessen wrote in Slate while contemplating: Masha Gessen, “A Medical Quest: In Which I Gain a Greater Understanding of Breasts and Ovaries,” Slate, June 14, 2004.

  S
urgical menopause does all the other things: Mayo Clinic Staff, “Menopause: Causes,” Mayo Clinic, January 24, 2013, accessed March 14, 2014, www.mayoclinic.com/health/menopause/DS00119/DSECTION=causes.

  Hormone replacement therapy: Ovarian removal itself cuts a premenopausal woman’s risk of breast cancer by about half, according to the Mayo Clinic (“Oophorectomy,” Mayo Clinic, April 5, 2011, accessed March 14, 2014, www.mayoclinic.com/health/breastcancer/WO00095.), but certain sorts of hormone replacement therapy has been shown to raise some women’s risk of developing breast cancer, according to the American Cancer Society (“What Are the Risk Factors for Breast Cancer?” American Cancer Society). According to the BRCA-advocacy organization FORCE, “because much of the research has been conducted on women who experienced natural menopause, the applicability to women experiencing early surgical menopause is uncertain.” (“Surgical Menopause,” FORCE, accessed March 14, 2014, www.facingourrisk.org/info_research/risk-management/surgical-menopause/index.php?PHPSESSID=abd77629cea63d915a379fdbceeb77aa).

  Some studies have found links: “Press Release: Early Surgical Menopause Linked to Declines in Memory and Thinking Skills,” Science Daily, January 14, 2013, accessed March 14, 2014, www.sciencedaily.com/releases/2013/01/130114161319.htm; L. T. Shuster, et al., “Prophylactic Oophorectomy in Premenopausal Women and Long-Term Health—A Review,” Menopause International 14, no. 3 (2008): 111–16; F. Atsma, et al., “Postmenopausal Status and Early Menopause as Independent Risk Factors for Cardiovascular Disease: A Meta-analysis,” Menopause 13, no. 2 (March–April 2006): 265–79; Cathleen M. Rivera, et al., “Increased Cardiovascular Mortality after Early Bilateral Oophorectomy,” Menopause 16, no. 1 (2009):15–23; W. A. Rocca, et al., “Survival Patterns after Oophorectomy in Premenopausal Women: A Population-Based Cohort Study,” Lancet Oncology 7, no. 10 (October 2006): 821–28. But in BRCA1 and 2 patients, there is some indication that prophylactic oophorectomy may lengthen life, see: K. Armstrong, et al., “Hormone Replacement Therapy and Life Expectancy after Prophylactic Oophorectomy in Women with BRCA1/2; Mutations: A Decision Analysis,” Journal of Clinical Oncology 22, no. 6 (March 15, 2004).