Choosing Double Mastectomy Before You Even Have Cancer - Jessica Queller's Decision
A few weeks ago my friend who is the publisher of a new division of Random House sent me an amazing book she's publishing: PRETTY IS WHAT CHANGES: Impossible Choices, the Breast Cancer Gene, and How I Defied my Destiny by Jessica Queller.
I opened the book and took a quick look at it, thinking I'd put it aside until I caught up on all the work I'd fallen behind on because of my nipple reconstruction surgery, but the first page hooked me, and I read it straight through in less than a day. Since I started this SharePost last week, the book has officially been published and has started garnering great reviews and wide coverage: an interview with Queller ran yesterday on NPR's Morning Edition, and reviews have run in US News and World Report and Entertainment Weekly, among other publications. Also, praise from our very own Cancer Vixen, Marisa Acocella Marchetto, appears on the back of the book.
The basics of Queller's eloquent and compellingly-told story are these: after witnessing her mother's horrific and protracted and ultimately losing battle with ovarian cancer (after two previous bouts of breast cancer), she decided to have the BRCA test. The results came back positive, and at 34 Queller -- young, gorgeous (my word, not hers), and single -- was faced with an impossible decision: to ignore the results and the increased odds of breast and ovarian cancers those results pointed to, or to have a prophylactic double mastectomy and oophorectomy.
Queller was 35 when she finally met with a genetic counselor and began the decision-making process which eventually led her to make the choice she made: to have the breast surgery and reconstruction when she was 35, and to hold off on the oophrectomy until she turns 40 (she very much wants to have a biological child). It's an agonizing journey, full of the requisite denial and fear and sadness you'd expect someone to feel when confronted with such choices -- and odds.
What you don't expect, and what is so surprising, is the uplifting quality of Queller's tale: her gutsy determination to make a decision in the face of overwhelming amounts of contradictory genetic and medical research and people's shock and horror and belief that radical prophylactic surgery at her age -- and at any age -- is crazy because she doesn't even have cancer. Those of us who have had to make that decision when DCIS is present or when lumpectomies would allegedly suffice after cancer actually surfaces have felt the sting of people thinking we're "over-reacting" (PJ Hamel and I recently wrote SharePosts on this topic in response to a February 2008 Washington Post article on a "trend" in women opting for prophylatic mastectomies; read my SharePost and PJ's). To have to make that decision -- let alone defend it -- when no disease is present yet, as in Queller's case -- seems unimaginably cruel.
But Queller is forced to make her decision in the shadows of an even greater cruelty: the grief and trauma of watching her mother, a stylish and sophisticated New York fashion designer, suffer beyond imagination, and it is perhaps in this context that Queller's worst nightmares and subsequent choices can be best understood. Why not, as Cokie Roberts ridiculously suggested to Queller on "Nightline" a few weeks after her Op-Ed piece on the topic ran in The New York Times, just wait for the cancer to come and then get it treated? Because. Because for someone who has seen the ravages of the disease first-hand, that is far too great of a risk to take.
Queller, a television writer, brings all her talent to bear on the telling of her story and the stories of various friends and acquaintances she meets along the way who are also battling the disease. She is thoughtful, highly articulate, and deeply sensitive to all sides of the argument -- especially to her younger sister, who, though also traumatized by their mother's death, resists genetic testing herself and respectfully questions Queller's decision.
PRETTY IS WHAT CHANGES -- the title -- comes from Stephen Sondheim's "Sunday in the Park with George" and the full epigraph at the front of the book perfectly encapsulates the simple but profound beauty-is-in-the-eye-of-the-beholder ending of Queller's story:
Pretty isn't beautiful, Mother.
Pretty is what changes.
What the eye arranges
Is what is beautiful.
But the core of her story is much more than the rhetorical question of post-operative attractiveness and aesthetics -- it's about survival and risks you can live with -- hopefully for a very, very long time.
Also take our Community Poll: If genetic test results indicated that cancer was very likely in your future, what would you do?