by Lizzie Stark
These ambiguities around risk: Löwy, Preventive Strikes, 146.
The numbers show that of the BRCA women: C. Garcia, et al., “Risk Management Options Elected by Women after Testing Positive for a BRCA Mutation.” Different numbers that follow the same general trend can be found here: M. S. Beattie, et al., “Uptake, Time Course, and Predictors of Risk-Reducing Surgeries in BRCA Carriers.”; K. Singh et al., “Impact of Family History on Choosing Risk-Reducing Surgery among BRCA Mutation Carriers.”; M. D. Schwartz, et al., “Long-Term Outcomes of BRCA1/BRCA2 Testing: Risk Reduction and Surveillance.”
A study that examined the breasts: Löwy, Preventive Strikes, 153.
“An enhancement of radiologists’ capacity …”: Ibid., 153.
Malcolm Gladwell posed one: Malcolm Gladwell, “The Picture Problem,” New Yorker, December 13, 2004; National Cancer Insitute, “SEER Stat Fact Sheets: Breast Cancer.”
If screening works: Given that recurrence rates are different for different stages and types of breast cancer, the exact percentage of early-stage cancers that later metastasize is difficult to pin down. Here are a few estimates: Up to 30 percent. (Elia Ben-Ari, “A Conversation with Dr. Patricia Steeg on Redesigning Clinical Trials to Test Therapies That Could Prevent Cancer Metastasis,” NCI Cancer Bulletin 9, no. 12 (June 12, 2012), accessed March 13, 2014. www.cancer.gov/ncicancerbulletin/061212/page4). 21 to 25 percent for estrogen-receptor positive cancer with five or ten years of tamoxifen treatement. (National Cancer Institute, “Ten Years of Tamoxifen Reduces Breast Cancer Recurrences, Improves Survival,” March 20, 2013, accessed April 17, 2014, www.cancer.gov/clinicaltrials/results/summary/2013/tamoxifen-10yrs0313). About 30 percent of early-stage patients end up with recurrence. (A.M. Gonzales-Angulo, et al., “Overview of Resistance to Systemic Therapy in Patients with Breast Cancer,” Advances in Experimental Medicine and Biology, 608 (2007): 1–22). 25 to 45 percent of breast cancer patients develop metastatic cancer. (V. Guarneri and P. F. Conte, “The Curability of Breast Cancer and the Treatment of Advanced Disease,” European Journal of Nuclear Medicine and Molecular Imaging, 31 Suppl. (June, 2004): S149–61).
A 2011 Danish meta-study: P. C. Gøtzsche, “Relation Between Breast Cancer Mortality and Screening Effectiveness: Systematic Review of the Mammography Trials,” Danish Medical Bulletin, 58(3), (March, 2011), A4246.
“Despite substantial increases …”: Archie Bleyer and Gilbert Welch, “Effect of Three Decades of Screening Mammography on Breast Cancer Incidence,” New England Journal of Medicine, November 22, 2012, 367: 1998–2005. A study by Dartmouth researchers says it’s overwhelmingly likely that mammography does not save lives: Gilbert Welch and Brittney A. Frankel, “Likelihood That a Woman with Screen-Detected Breast Cancer Has Had Her ‘Life Saved’ by That Screening,” Archives of Internal Medicine 171, no. 22 (December 11, 2011), 2043–46.
Mammograms may or may not: Wendy A. Berg, et al., “Detection of Breast Cancer with Addition of Annual Screening Ultrasound or a Single Screening MRI to Mammography in Women with Elevated Breast Cancer Risk,” Journal of the American Medical Association 307, no. 13 (April 4, 2012); “American Cancer Society Recommendations for Early Breast Cancer Detection in Women without Breast Symptoms,” American Cancer Society, January 28, 2014, accessed March 14, 2014, www.cancer.org/cancer/breastcancer/moreinformation/breastcancerearlydetection/breastcancer-earlydetection-acs-recs.
Still, so far, adding MRIs to mammograms: S. J. Lord, et al., “A Systematic Review of the Effectiveness of Magnetic Resonance Imaging (MRI) as an Addition to Mammography and Ultrasound in Screening Young women at High Risk of Breast Cancer,” European Journal of Cancer 43, no. 13 (September 2007): 1905–17; K. Passaperuma, et al., “Long-Term Results of Screening with Magnetic Resonance Imaging in Women with BRCA Mutations,” British Journal of Cancer 107, no. 1 (June 26, 2012): 24–30.
A mammogram exposes women: “General Questions and Comments on Radiation Risk,” American Cancer Society, August 9, 2013, accessed March 14, 2014, www.cancer.org/treatment/understandingyourdiagnosis/examsandtestdescriptions/imagingradiologytests/imagingradiology-tests-rad-risk.
“Quite honestly, there’s a lot …”: “Exposure to X-rays Raises Risk of Breast Cancer in Young Women with BRCA Faults,” Cancer Research UK, September 6, 2012, accessed March 14, 2014, www.cancerresearchuk.org/about-us/cancer-news/press-release/exposure-to-x-rays-raises-risk-of-breast-cancer-in-young-women-with-brca-faults; A. Pijpe, et al., “Exposure to Diagnostic Radiation and Risk of Breast Cancer among Carriers of BRCA1/2; Mutations: Retrospective Cohort Study (GENE-RADRISK),” BMJ (September 6, 2012): 345:e5660.
Two studies performed in Chinese and Russian: D. B. Thomas, et al., “Randomized Trial of Breast Self-Examination in Shanghai: Final Results,” Journal of the National Cancer Institute 94, no. 19 (October 2, 2002): 1445–57; J. P. Kösters and P. C. Gøtzsche, “Regular Self-Examination or Clinical Examination for Early Detection of Breast Cancer,” Cochrane Database of Systematic Reviews 2 (2003): CD003373.
Chapter 7: A Tale of Too Many Mastectomies
They’re even named for their breastlessness: Marilyn Yalom, A History of the Breast (New York: Ballantine Books, 1997), 22–23.
Saint Agatha, a Sicilian virgin: Yalom, History of the Breast, 32–36.
In 1810, she developed a lump: Fanny Burney, “A Mastectomy,” in Fanny Burney: Selected Letters and Journals, ed. Joyce Hemlow (Oxford: Oxford University Press, 1986), 135.
“This, indeed, was a dreadful interval”: Burney, “Mastectomy,” 136.
“I stood suspended …”: Burney, “Mastectomy,” 137.
They placed an ordinary cambric handkerchief: Burney, “Mastectomy,” 138.
“When the dreadful steel …”: Burney, “Mastectomy,” 138–40.
“I must own, to you …”: Burney, “Mastectomy,” 140–41.
Until the advent of chemotherapy: Marios Loukas, et al., “The History of Mastectomy,” American Surgeon 77.5 (May 2011): 566–71.
surgeon Jean-Louis Petit published: Loukas, et al., “History of Mastectomy.”
Both operations removed breasts: Loukas, et al., “History of Mastectomy.”
Doctors saw plenty of late-stage tumors: Aronowitz, Unnatural History, 91.
“At its most reductive …”: Ellen Leopold, A Darker Ribbon: Breast Cancer, Women, and Their Doctors in the Twentieth Century (Boston: Beacon Press, 1999) 62–63.
Interestingly, while doctors overwhelmingly: Donald Oken, “What to Tell Cancer Patients: A Study of Medical Attitudes,” Journal of the American Medical Association, 175, no. 13 (April 1, 1961): 1120–28.
“The fact that her surgeon …”: Leopold, Darker Ribbon, 122–25.
Fanny Rosenow called the New York Times: Jimmie Holland and Sheldon Lewis, The Human Side of Cancer: Living with Hope, Coping with Uncertainty (repr., New York: Harper Perennial, 2001) 8–9; Mukherjee, Emperor of All Maladies, 26–27.
Public discussion of breast cancer: Women’s cancer: Nancy G. Brinker with Joni Rodgers, Promise Me: How a Sister’s Love Launched the Global Movement to End Breast Cancer (New York: Crown Archetype, 2010) 169, 212, 214; Corinna Wu, “A Leading Lady,” Cancer Today, American Association for Cancer Research, September 27, 2012, accessed March 14, 2014, www.cancertodaymag.org/Fall2012/Pages/betty-ford-yesterday-and-today.aspx.
Rose Kushner, who went after: Olson, Bathsheba’s Breast, 172.
Eventually, she testified before NIH: Hon. Constance A. Morella, “Tribute to Rose Kushner,” Congressional Record 101st Congress (1989–1990), Library of Congress, January 23, 1990; Leopold, Darker Ribbon, 234–35.
After all, it wasn’t the surgeon’s life: Olson, Bathsheba’s Breast, 174.
Now, the two-step biopsy procedure: Judith Rosenbaum, “Rose Kushner: 1929–1990,” Jewish Women: A Comprehensive Historical Encyclopedia, accessed March 14, 2014, http://jwa.org/encyclopedia/article/kushner-rose.
She spoke the unspeakable words: Brinker, Promise Me, 214–16; Wu, “A Leading Lady.”
“many Americans still considered …”: “New Attitudes Ushered in by Betty Ford,” New York Times, October 17, 1987.
Within a few weeks of Ford’s diagnosis: Jane E. Brody, “Inquiries Soaring on Breast Cancer,” New York Times, October 6, 1974, 21.
According to her 2011 Time magazine obituary: Nancy Gibbs, “Betty Ford, 1918–2011,” Time, July 8, 2011.
A Harris Interactive poll: Emily Wax, “To Cancer ‘Previvors,’ Angelina Jolie’s Public Revelation Was a Gift of Support,” Washington Post, July 11, 2013; Lisa Szabo, “Angelina Jolie’s News Prompts Women to Call Doctors,” USA Today, May 15, 2013; Liz Neporent, “Jolie’s Doctor Says Her Story Raises Awareness, Saves Lives,” ABC News, October 15, 2013, http://abcnews.go.com/Health/angelina-jolies-doctor-story-raises-awareness-saves-lives/story?id=20567547.
Unfortunately, the idea that women: Over at Forbes, David Kroll was concerned “that women with breast cancer may think they are not being aggressive enough with their current treatment plan,” as well as that Jolie’s mastectomy might scare some women off from yearly mammograms and self-examinations. (David Kroll, “A Cautionary Perspective on Angelina Jolie’s Double Mastectomy,” Forbes, May 14, 2013. Accessed April 18, 2014. www.forbes.com/sites/davidkroll/2013/05/14/a-cautionary-perspective-on-angelina-jolies-double-mastectomy/.); At CNN.com, H. Gilbert Welch noted, “If American women saw themselves in Angelina Jolie—then that would be a problem. Because the next logical question is: Should I get a preventive mastectomy?” (H. Gilbert Welch, “What Angelina Jolie forgot to mention,” CNN.com, May 18, 2013. Accessed April 18, 2014. www.cnn.com/2013/05/17/opinion/welch-jolie-mastectomy/.); At Salon, Joan Walsh concluded her piece on Jolie with, “It would be wonderful if Jolie’s essay motivated more women to learn more about their breast cancer risk. It would be sad if it scared them out of screening, or into getting unnecessary mastectomies.” (Joan Walsh, “Angelina Jolie’s Choice Not the Only One,” Salon, May 14, 2013. Accessed April 18, 2014. www.salon.com/2013/05/14/angelina_jolie%E2%80%99s_choice_not_the_only_one/.) For more examples of how the media treated Jolie’s mastectomy, simply do an Internet search for “Jolie unnecessary mastectomy.”
Some of the articles confused: It is worth noting that between 1993 and 2003, the rates of women with breast cancer—not necessarily just BRCA patients—choosing contralateral prophylactic mastectomy increased by about 150 percent, a trend that has justly concerned medical professionals. (Abenaa M. Brewster and Patricia Parker, “Current Knowledge on Contralateral Prophylactic Mastectomy Among Women with Sporadic Breast Cancer,” Oncologist, 16(7), (July 2011): 935–941.) Still, although it appears that contralateral mastectomy may not increase overall life span, I feel that dubbing these mastectomies “unnecessary” does an injustice to the women who choose them. Life span is not the only measure of an operation’s effectiveness and worthiness. For women without BRCA mutations who have already had cancer in one breast, and who are under fifty at the time of their first diagnosis, the risk of developing contralateral breast cancer is around 13 percent—about the same as an average woman’s chance of developing the disease in the first place. These women have already failed their first dice roll—is it so unreasonable for these same patients to worry about losing the roll again during round two? Who gets to decide what level of lifetime risk—what level of fear of breast cancer—is tolerable for an individual in the long run? Presumably, to these patients, a contralateral mastectomy may feel essential as a tool for remedying fear of a recurrence, as well as for reducing the relatively low risk of developing contralateral cancer.
What science we have shows: Kelly Metcalfe, 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, 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, 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, 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, et al., “Risk Reducing Mastectomy: Outcomes in 10 European Centres,” Journal of Medical Genetics 46, no. 4 (2009): 254–58; S. M. Domchek, 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, 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, et al., “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.
Rose Kushner and fellow journalist Betty Rollin: Mukherjee, Emperor of All Maladies, 200; Olson, Bathsheba’s Breast, 175–76.
He spent ten years gathering data: Mukherjee, Emperor of All Maladies, 200.
Doctors prescribed oophorectomy: Löwy, Preventive Strikes, 20.
Irregular period? Epileptic? Nymphomaniac?: Leopold, Darker Ribbon, 61.
the removal of ovaries has been linked: D. Shoupe, et al., “Elective Oophorectomy for Benign Gynecological Disorders,” Menopause 14, no. 3 (May–June 2007, part 2): 580–5.
Removing the uterus through hysterectomy: “Hysterectomy,” Medline Plus, National Institutes of Health, accessed March 14, 2014, www.nlm.nih.gov/medlineplus/hysterectomy.html.
An 1882 paper by New York surgeon: T. G. Thomas, “On the Removal of Benign Tumors of the Mamma without Mutilation of the Organ,” N.Y. State J. Med. Obstet. Rev. (April 1882): 337–40.
Thirty-five years later, St. Louis surgeon Willard Bartlett: Willard Bartlett, “An Anatomic Substitute for the Female Breast,” Annals of Surgery (Philadelphia) 66 (1917): 208–11.
The idea that cystic mastitis: Mayo Clinic Staff, “Fibrocystic Breasts,” Mayo Clinic, March 8, 2013, accessed March 14, 2014, www.mayoclinic.com/health/fibrocystic-breasts/DS01070.
Surgeon Joseph Bloodgood: “Joseph Cold Bloodgood: November 1, 1867–October 22, 1935,” American Journal of Cancer 26 (1936): 397–98.
Cancer and lumpy breasts feel: J. C. Bloodgood, “Borderline Breast Tumors,” Annals of Surgery 93 (1931): 239, 249.
From this he concluded: Bloodgood, “Borderline Breast Tumors,” 246–47.
“The danger of an incomplete operation …”: Bloodgood, “Borderline Breast Tumors,” 241.
Faced with uncertainty in 1931: Bloodgood, “Borderline Breast Tumors,” 235–49.
By the 1940s: Löwy, Preventive Strikes, 97.
A mid-1960s survey found: Nora Jacobson, Cleavage: Technology, Controversy, and the Ironies of the ManMade Breast (New Brunswick, NJ: Rutgers University Press, 2000) 129. That research is based on a survey cited in Michael Gurdin and Gene A. Carlin, “Complications of Breast Implantations,” Plastic and Reconstructive Surgery 40, no. 6 (1967): 530–33 and Tibor de Cholnoky, “Augmentation Mammaplasty: Survey of Complications in 10,941 Patients by 265 Surgeons,” Plastic and Reconstructive Surgery 45, no. 6 (1970): 573–77.
Prophylactic mastectomy in the 1970s was marked: Jacobson, Cleavage, 129–134.
In the meantime, surgeons performed: Ibid., 129–30.
The X-rays picked up stuff: Löwy, Preventive Strikes, 107.
As mammography became standard: Ibid.
“In the 1970s, women diagnosed …”: Ibid., 108.
those results depended on having: Jacobson,
Cleavage, 130.
Pennisi’s follow-up study: Jacobson, Cleavage, 132–134. That research is based on Vincent R. Pennisi and Angelo Capozzi, “The Incidence of Obscure Carcinoma in Subcutaneous Mastectomy,” Plastic and Reconstructive Surgery 56, no. 1 (1975): 9–11.
It’s hard to get good data: Loukas, et al., “History of Mastectomy.”
Chapter 8: The Black Cloud
alcohol consumption has been connected: “What Are the Risk Factors for Breast Cancer?,” American Cancer Society, January 31, 2014, accessed March 14, 2014, www.cancer.org/cancer/breastcancer/detailedguide/breastcancer-risk-factors.
Once known as “nun’s disease”: Olson, Bathsheba’s Breast, 21.
A professor of medicine writing: Ibid., 22.
Women who give birth: Ibid.
women who have fewer periods during their lifetimes: “Pregnancy and Breast Cancer,” American Cancer Society, October 2, 2013, accessed March 14, 2014, www.cancer.org/cancer/bresatcancer/moreinformation/pregnancy-and-breastcancer.
Pregnancy reduces ovarian: “Reproductive History and Breast Cancer Risk,” National Cancer Institute, National Institutes for Health, accessed March 14, 2014, http://m.cancer.gov/topics/factsheets/reproductive-history.
While having kids lowers risk: Ibid.
Tamoxifen reduces the risk: Löwy, Preventive Strikes, 185.
A 1998 study: Bernard Fisher, et al., “Tamoxifen for Prevention of Breast Cancer: Report of the National Surgical Adjuvant Breast and Bowel Project P-1 Study,” Journal of the National Cancer Institute 90, no. 18 (1998): 1371–88.
A subsequent smaller trial of tamoxifen: M. King, et al., “Tamoxifen and Breast Cancer Incidence Among Women with Inherited Mutations in BRCA1 and BRCA2: National Surgical Adjuvant Breast and Bowel Project (NSABP-P1) Breast Cancer Prevention Trial,” Journal of the American Medical Association 286, no. 18 (2001): 2251–56.
tamoxifen reduces the risk of estrogen receptor-positive: “RiskLowering Drugs,” Susan G. Komen, January 21, 2014, accessed March 14, 2014, http://ww5.komen.org/BreastCancer/RiskLoweringDrugs.html.
