A WORLD OF BOOKS What We Have from page 29 Meet the Author WHO: Amy Boesky AGE: 51 GREW UP: Bloomfield Hills EDUCATION: Graduate, Birmingham Seaholm High School; Bachelor of Arts, Harvard College; Master of Philosophy in Renaissance English, Oxford University, England; Ph.D. in English, Harvard University. POSITION: Associate professor of English, Boston College, primarily teaching 17th century British literature and creative non-fiction. OTHER TITLES: Author of books for children and young adults – Planet Was, 1990, Little Brown; a principal ghostwriter for Sweet Valley High series for teenage girls and helped create the Beacon Street Girls series. FAMILY: Husband, Jacques; daughters Sacha, 18, and Elisabeth (Libby), 16. Amy Boesky will appear at 10 a.m. on Friday, Nov.12, as part of the 59th Annual Jewish Book Fair at the Jewish Community Center in West Bloomfield. For more information, please visit www.jccdet.org/bookfair. Genetic Factors Increase Risk Of Ovarian Cancer Nationally, about 23,000 women each year devel- op ovarian cancer. The lifetime risk estimates for ovarian cancer indicate that 14 out of 1,000 women in the general population compared with 150-400 out of 1,000 in the population that carries the genetic mutations known as BRCA1 or BRCA2 will be diagnosed with ovarian cancer. The likelihood that breast and/or ovarian cancer is associated with a harmful mutation in BRCA1 or BRCA2 is highest in families with a history of mul- tiple cases of breast cancer, cases of both breast and ovarian cancer, one or more family members with two primary cancers (original tumors that develop at different sites in the body), or an Ashkenazi (Eastern European) Jewish background. However, not every woman in such families car- ries a harmful BRCA1 or BRCA2 mutation, and not every cancer in such families is linked to a harm- ful mutation in one of these genes. Furthermore, not every woman who has a harmful BRCA1 or BRCA2 mutation will develop breast and/or ovar- ian cancer. - Source: National Cancer Institute 30 October 28 • 2010 When she died, at age 58, from an aggressive recurrence of the breast cancer, the link between hereditary breast and ovarian cancer had not yet been discovered. That was announced a few months later, when the BRCA1 gene mutation was discovered. The following year, a second gene, BRCA2, was also found to cause breast and ovarian cancer. (See related story) "That was truly shocking for me and for my sisters," Amy says. "I'm not sure why, but we had derived a certain comfort from believing that what my mother had was dif- ferent" from what had killed our other relatives. "But I do know that learn- ing that the two cancers were related was earth-shaking for me ... I felt like the whole world had shifted." and controlled by a biotech firm in Utah. That company, Myriad, actually holds a series of patents on me — or at least this part of me. And I'm not happy about it." She isn't alone. A legal case, ACLU v. Myriad Genetics, is making its way through the federal courts. In March, a federal judge ruled against Myriad, which is appealing the decision. She also writes on another of her passions — the move- ment to create a National Cancer Previvors' Day, recognizing those who are survivors of a predisposition to cancer, but haven't had the disease. As openly as she discusses the issue now, Amy readily A picture of Amy Boesky's mother, Elaine, as a young girl, embraced by Amy's grandmother acknowledges that suscepti- bility to ovarian cancer was Sylvia. Both succumbed to inherited cancer. a family secret. "We never talked about it. It was in the closet," she says. Improving Their Odds Over the five years since Within the next few years, she began writing the book, having each had two children hereditary breast and ovar- — five girls and a boy — all ian cancer (HBOC) has three sisters had complete become increasingly talked hysterectomies and double and written about. "It's much mastectomies. more open then it was:' she "We were trying to improve say, "but there's still a long our odds. We were trying to way to go. make it through our 40s," The Boesky sisters, Sara, Amy and Julie, the "I feel I have an educa- Amy says. summer after their mother's death tional outreach mission. It's Now, two are into their 50s important to have women and Sara, Amy's older sister, who have the predisposition has since tested negative for the gene mutation, which know what we went through. We can use this knowl- means her two daughters can't inherit it. edge and educate our sons and daughters." Of their two second cousins, one has tested positive, so they know they "own" a broken gene. 'A Beautiful Story' "So far, I've chosen not to have the test:' Amy says. "I'm so proud of her:' says Dolly Katzenberg, who "It's a murky, complicated genetic soup. We want clar- taught Amy at Quarton Elementary School in ity but it doesn't necessarily work that way:" Birmingham. "She was a hard worker and a sweet, Her sister, Julie, also has declined to be tested so far. sweet kid — all the things that teachers want kids to Amy is dismayed by the fact that one laboratory be. holds the patents for the gene mutations and is the "I think she wrote a beautiful story': says only source in the United States for the test, ruling out Katzenberg, now retired and living in West Bloomfield. second opinions. "It was unbelievable to me that I didn't know any "No way am I having them test me she says of this': says Karen Rouff, a best friend through junior emphatically. high and high school. It's a cause she has attacked on two fronts — as a "Her writing is so vivid. I was crying. I didn't know scholar and as a writer. how emotional I would be says Rouff, a clinical She is researching dilemmas surrounding gene pat- social worker who lives with her family in Bloomfield ents and their antecedents in the early history of mod- Township. ern science. And she is writing op-ed pieces for such "I think she was very courageous to write if; she media as the Boston Globe and the Huffington Post. says. "It was very honest and a beautiful tribute to her mother." On The Attack When What We Have was published in August by "It turns out my body isn't completely mine she wrote Gotham Books, Amy says, it marked 17 years since in the Huffington Post. "One of my genes — the one Elaine Boesky died. that's had the biggest impact on my life — is owned "I miss my mother every day." E