My bare chest is an open playbook. As I sit on the hospital cot, the plastic surgeon draws lines on my skin with a purple marker. He measures shoulder to shoulder -- mark here, mark there -- then nipple to nipple -- dash here, dash there. He moves quickly, adeptly, as though he's done this a hundred times before. He probably has.
The breast surgeon, her resident and the other blue-scrub, white-coat-wearing doctors huddle around us, staring intently at my chest. The overhead lights are bright. I see little clearly without my glasses, but what I do make out is this: the marker streaking across my sternum, the crowd gathered to watch, the curtains closed on all sides.
Yes, if my chest is the playbook, then removal of my breasts is the play.
In my family, breast cancer is like puberty. If you are a woman, you wait for it, prepare for it, wondering when -- not if -- breast cancer will strike. I was 12 years old when my mother was diagnosed with breast cancer for a second time. (I wasn't even aware of the first; I was only 7.) But by then, I had already seen her sister undergo a mastectomy, and I was well aware that my grandmother had survived breast cancer, too. So I wasn't surprised when it happened to my mom, just like I assumed that someday I would develop it myself.
Ovarian cancer, on the other hand, we hadn't planned for. It came quietly, unannounced. My mother began to feel bloated, her abdomen swelled, and three months later when the doctor removed her ovaries he also excised a tumor the size of a grapefruit.
"You'll be here in five years," the doctor told her. "I can't tell you how you'll be, but you'll be here."
Almost exactly five years later -- five years of constant chemotherapy that had, in year five, induced two complete remissions -- the cancer exploded, aggressively, violently. One year later, my mother died, just 18 days shy of her 49th birthday.
"I always said I wouldn't die of breast cancer," she told me, gazing out the window on an afternoon some months before her death. "I should have said I wouldn't die of cancer. Period."
I am 30 years old and about to undergo a prophylactic bilateral mastectomy -- that is, I am opting to have my healthy breast tissue scraped clean from my skin, removed and replaced with silicon substitutes. When I awaken from the anesthesia in four or five hours, I will have two new, slightly-larger-than-my-natural mounds on my chest, two drainage tubes stitched into my sides and two gauze-covered, glue-glistening incisions, each a 2-inch slice drawn downward from the nipple's areola.
Am I making the right decision?
The question hits only in the final few days before the procedure, when I can no longer distract myself with work but must instead prepare for my first major operation.
I reason through maternal family history: My grandmother's mother died of breast cancer when she was in her early 50s; my grandmother's sister died of breast cancer at the age of 35; my grandmother was diagnosed with breast cancer the year I was born, had a mastectomy and is still alive today; of my grandmother's five daughters, four developed breast cancer, two in their early 30s, one of whom was my mom, and two right around age 50. Of these, the two who developed cancer earlier in life have since died and the other two have undergone bilateral mastectomies with chemotherapy and reconstruction. My grandmother's one daughter who hasn't developed breast cancer is also the only daughter who has tested negative for the type of BRCA mutation that indicates a high risk of cancer.
According to statistics, having a prophylactic bilateral mastectomy drops my lifetime risk of developing breast cancer from between 55 percent to 85 percent with a BRCA mutation down to a mere 5 percent to 10 percent. (Risk cannot be eliminated because even the most experienced surgeon cannot remove all breast tissue.)
But statistics, by their nature, are generalized. They don't predict how much a particular mutation will penetrate a particular family line, and if you look at my family's history of cancer, two things become very clear.
First, our mutation is potent. In other words, as a carrier of the mutation, my question is not will I get cancer; it is when will I get cancer?
This brings about observation No. 2. In my mother's family, each generation has seen some women whose cancer appears in their early 30s and others who develop malignancies at about age 50. Given that those earlier-onset cancers seem to be indicative of a much more aggressive disease (the women who were diagnosed in their 30s have all since passed away), I don't really want to take that gamble.
Am I making the right decision? Yes, unequivocally yes.
According to the National Cancer Institute, it is estimated that in 2013 more than 200,000 new cases of breast cancer will be diagnosed and more than 40,000 women will die of breast cancer. It is the second most prevalent form of cancer diagnosed in women and the second most deadly. Ovarian cancer occurs less frequently -- the ninth most common form of cancer -- but ranks fifth among causes of cancer deaths.
While only an estimated 5 percent to 10 percent of these cancers are hereditary, as opposed to sporadic, more than 750,000 people in the United States carry a BRCA genetic mutation that significantly elevates their lifetime risk of developing breast or ovarian cancer, and estimates suggest that 90 percent of these individuals don't know that they do.
Not every family with hereditary breast and ovarian cancer syndrome (HBOC) has a history riddled with malignancies -- though many, like mine, do -- but there are key characteristics within a family tree that suggest a predisposition to HBOC, including multiple cancers within a family, onset at an early age, two or more primary cancers in a single individual and cases of male breast cancer.
As genetic testing promises a more personalized approach to medicine, generations of men and women will not only have the opportunity to access the fate-wielding details of their biology but also the power to make informed choices about prevention. Thanks to high-profile celebrities like Angelina Jolie who are BRCA carriers and have chosen to share their stories, awareness of HBOC is greater than ever. It seems only fitting, then, that as we celebrate breast cancer awareness this month we continue to make public this life-saving knowledge.
It is knowledge that saves, after all. Had my mother known that her family and personal cancer history put her at a high risk of developing ovarian cancer, she might have elected to have her ovaries removed once she finished having children. Instead, we -- my sister, my brother and myself -- her children, have graduated college, married and grown into our adult lives without her. Our children will never meet their grandmother, my mother; but they will know her person through us and they will know her battle in the choices we make for our health. With each generation, I hope, those choices will become less radical and more readily available to all.homepage - opinion_commentary
Nicole Rose Land is an advocate for women's and mental health and works at the Steeltown Entertainment Project. She volunteers with Facing Our Risk of Cancer Empowered (www.facingourrisk.org), the only national nonprofit dedicated to hereditary breast and ovarian cancer. She lives in Edgewood. First Published October 19, 2013 8:00 PM