Boston-based journalist Lizzie Stark will be talking about her new book Pandora’s DNA: Tracing the Breast Cancer Genes Through History, Science, and One Family Tree on Monday, Nov. 3 at 7 p.m. at the Brookline Booksmith.
There is a particular story in Lizzie Stark’s powerful new bookPandora’s DNA that would have been a fitting scene in one of the marathon of horror movies I watched on Halloween this past Friday night. I’m not going to share the details of the story because I believe that every woman (and every man who cares about women) should read this book. You’ll know the story I’m referring to when you read it. Just be glad that you live in an age of general anesthesia.
What’s interesting is that in the realm of breast cancer treatment and prevention, we’ve definitely come a long way, baby…yet there is still no cure and the preventive methods still involve imperfect science: the ubiquitous but unreliable proscription for breast self-exams; the mammogram’s rate of false positive results, especially among younger women with dense breast tissue; and the mutilation of women’s bodies as a prophylactic. The discovery of the BRCA1 and BRCA2 genes in 1995 have made it possible for women with a history of breast cancer in their family to make proactive decisions about insuring their own breast health but it’s also opened up a new can of worms—women who are lucky enough to afford genetic testing are asking themselves, should I get tested? What will I do if I find out that I’m positive? (those with BRCA1 and BRCA2 genes have a 40-65% lifetime chance of developing breast cancer; women without the BRCA mutation have a 12% chance.) For those of childbearing age, as Stark is, there’s the question do I risk passing on this genetic mutation to my future children?
Stark uses the matrilineal side of her own family tree to tell a compelling story of the devastation that breast cancer can wreak, but also the hope that with each generation the story will have a happier ending. Stark—whose mother, grandmother, and two great-aunts were all diagnosed with breast cancer—is 27 when she gets the genetic test done. The result is positive and though it is not a cancer diagnosis, to Stark it certainly feels like one. She was too young to remember her mother’s first breast cancer diagnosis and her mastectomy, but she recalls her mother’s many subsequent hospitalizations with thyroid cancer, the removal of her thyroid, as well as a hysterectomy, appendectomy, and oophorectomy. She also lives with the story of her great-aunt Trudy, who upon finding out she has breast cancer, opts not to get a radical mastectomy and dies at age 31. Her great-aunt El develops both breast and ovarian cancer, but unlike Trudy El, a mother of four young children, opts to get a mastectomy as well as undergo radiation and chemotherapy, the latter being a fairly new treatment at the time. Later, when Stark’s mother Gretchen is diagnosed with breast cancer, Stark’s Aunt Cris decides to have a prophylactic mastectomy.
Decades later, Stark will face a similar decision, although with a few additional but not ideal options. Having tested positive for the BRCA mutation, she could either submit herself to repeated breast exams, mammograms, MRIs, and follow-up tests to investigate any findings, no matter how benign they might ultimately be; she could remove her breasts and possibly her ovaries; or she could undergo chemoprevention, which would cause temporary menopause and lessen her risk of cancer—at least for a while. Stark, an otherwise healthy young woman and newlywed with her first book contract, opts for a mastectomy and breast reconstruction.
As the book’s subtitle suggests, Stark places her personal story in an historical and scientific context, exploring the history of breast cancer and the serpentine, sometimes downright strange, journey that has led to modern treatments. The first allusion to breast cancer is found in the ancient Smith Papyrus, written in the seventeenth-century BCE, which includes case forty-five, “swellings on the breast, large, spreading, and hard; touching them is like touching a ball of wrappings, or they may be compared to the unripe hemat fruit, which is cool and hard to the touch.” The cure? “There is none.” Stark also writes about Myriad Genetics’ controversial decision to patent the BRCA gene, and the media hype around Angelina Jolie’s editorial in The New York Times about her prophylactic mastectomy and what the media referred to as the “Jolie Effect”—the supposition that women would rush out to get mastectomies because they were influenced by the actress. Then there are the issues that arise if a woman opts for reconstructive surgery after a mastectomy. This decision comes with a host of new questions: go larger or smaller? Maintain your original nipples or get Barbie-smooth breasts? Get a tissue flap—a procedure that involves using tissue from your abdomen or buttocks to build new breasts—or get synthetic implants?
Pandora’s DNA is a fascinating story that is well told, even if at times it’s a difficult read. Like most women the fear of breast cancer runs deep in me—despite the fact that I don’t have a family history, my best friend had it when she was 40 and each time I get a breast exam I hold my breath because really, it could happen to anyone. People who have the BRCA gene are at a higher risk, but none of us are completely immune. There’s a heart-wrenching moment (one among many) in Stark’s personal story that particularly moved me. She is at the hospital about to get her prophylactic mastectomy. She goes into the bathroom to take one last look at her breasts in the bathroom mirror. She chastises herself for not taking a picture of them and worries she will forget what they look and feel like.
But there are also bright spots in Stark’s story. The fact that this specter of cancer has hung over Stark all her life has made her more dogged in her pursuit of new experiences and wish fulfillment. She is in a loving marriage, she has an advanced degree from Columbia University Graduate School of Journalism, Pandora’s DNA is her second published book—and she’s only in her early 30s. When time is uncertain, we tend to make the most of it.
After finishing Pandora’s DNA I couldn’t help but think that with all the strides that have been made in breast cancer research and genetic testing, it strikes me as shocking and barbaric that in 2014 removing a woman’s breasts is still a recommended method to prevent or treat cancer. One hopes that future women will have better options.
–By Jennifer Campaniolo