Pictures and updates, coming soon. Double cross my heart pinky swear.
Until then, I really wanted to post this article from a blogger who underwent an elective double mastectomy. This is near/dear to my heart and it is a fabulous perspective from one of the many women who have tested BRCA1/2 positive. Such a brave and courageous decision. I hope you found it as insightful and inspiring as I did.
Goodbye to My Breasts
by Lizzie Stark
I’m only 28, and the horror of learning I had up to an 85-percent chance of getting breast cancer was enough to make me get a double mastectomy. But I have no regrets.
Four days before I amputated my breasts, I had a theme party for them. My husband and I served martinis—boobtinis, actually, with two olives, of course. We wrapped melons with prosciutto, and since we couldn’t find a breast of veal to braise, we settled for butterflied chickens.
The party had two purposes. First, I wanted to celebrate 28 years of living with my born body. And second, I wanted to distract myself from the reality that in four short days I would be missing body parts I deeply valued.
Two weeks before the surgery, I required constant distraction. I watched two seasons of 30 Rock in three days. I let missionaries at the mall talk to me for almost an hour.
Last August I learned that I have one of the two known genetic mutations—BRCA1 or BRCA2—that drastically increase a person’s chance of developing breast cancer.
Having a BRCA mutation is like winning an especially crappy lottery. One in one thousand women win a heightened risk of breast and ovarian cancer! Choose from a fabulous double mastectomy, estrogen blockers, or the thrill of waiting for your twice-yearly mammograms to come back with cancer while you get felt up by every clinician in the state!
Some people would call me crazy for having a voluntary mastectomy at 28. But they haven’t grasped the full horror of the odds I’m looking at. A typical woman has about a one-in-eight chance of developing breast cancer within her lifetime, and the median age at which women are diagnosed with breast cancer is 61. But because of BRCA, before I had my breasts amputated my personal risk of breast cancer during my life hovered somewhere between 40 and 85 percent. I wouldn’t play Russian roulette with a gun that was 85 percent filled with bullets.
Furthermore, breast cancer in people with my mutation, the BRCA1 mutation, tends to develop much younger, often before menopause and with devastating results. I know—I’ve seen it. My mother received her breast cancer diagnosis a week before her 31st birthday, when I was 18 months old. Her mother had bouts of breast cancer in her 30s and 40s, and enjoyed a bonus round of ovarian cancer, a little fuck you from the universe, in her 50s. One of my grandmother’s sisters died of breast cancer at age 32, and the other one survived a couple rounds of breast cancer—only to die of ovarian.
The morning before my “Ta Ta to Tatas” party, my husband and I went shopping. At the store, we got stuck at the fruit bin, poring over honeydew melons; we’d decided to give a pair as a prize in our boob-pun contest.
“How about these?” I said, proffering a few to him.
“They’re not white enough,” he said. “We should find white ones, round, unblemished, and the same size.”
We stood over the bin and found me a new set of breasts.
The decision to have a mastectomy was wrenching. The first thing I had to give up was the idea of breastfeeding. For a few weeks I thought that if I could just get pregnant now, if I could just breastfeed my baby once before having my breasts off, than I wouldn’t have to miss out on anything.
But wanting to breastfeed isn’t a good reason to have a baby before you’re ready. And I could feel the ticking clock of my mother’s diagnosis date sneaking up on me. She was diagnosed at 30. I was 27, nearly 28 then. Could I beat her record? Did I really want to play chicken with my life?
My mother’s bouts with cancer were difficult for our whole family. It wasn’t just the multiple surgeries, the mastectomy, the reconstruction, the chemotherapy and radiation treatments, the hospitalizations for infection; it was the waiting for five years to see if the cancer would come back. It was the silence in the house, the cord of worry that infiltrated our spines, the feeling that every moment with my mother was precious, that any moment she could be taken away to the hospital, which was just a prelude to the moment when God—and if he exists at all he must be a sadistic jerk—would take her away forever and we would be left alone.
Thanks to science, wonderful science, I could spare my husband and my future children this kind of emotional trauma. I had the choice my mother never had.
I could have opted for chemoprevention, taken estrogen blockers for a few years. But frankly, the side effects of hot flashes and reduced sex drive sounded pretty crappy. I could have opted for surveillance, which would have included twice-yearly physical breast exams, pelvic exams, vaginal ultrasounds, blood tests, and mammograms alternated with MRIs—and still wouldn’t have eliminated the risk.
Eventually, after receiving results from a mammogram that reassured me that the lump they found was “probably benign”—thanks for the reassurance!—I decided that I wasn’t going to live in fear anymore.
I did not come to this decision lightly. I’m not the kind of woman who dreams about plastic surgery. I’m the kind of woman who doesn’t shave her legs in the winter. Faced with losing my breasts, I began to value them more. I was losing my unique feminine curves, the way I look in my favorite outfits, a part of my body that is sexual as well as aesthetic.
In the months before the operation, I felt like I’d eaten a carton of crazy. I drank like a fish, gorged on Haagen-Dazs bars, alternately wept or felt nothing at all, dirtied the house, gained 20 pounds, and told near strangers all the grisly details about the specific procedure I’d chosen, a direct-to-implant operation that would spare my nipples and send me home with reconstruction already complete.
Mentally, I felt stuck in August, when I’d received my initial diagnosis. I couldn’t adjust to the fact that it was now winter, and that I was going to amputate my breasts in three months, no, two months, no, 18 days. Those last three weeks were some of the hardest of my life. The last precious days with my décolletage. I wanted to make the most of them because this operation would damage many of the nerves in my breasts, including my nipples, leaving me numb. But the touching of my breasts brought mental flash-forwards to the moment when my surgical oncologist would take a scalpel to the underside of my breasts and scoop out the tissue—an image that is profoundly unsexy.
In those weeks, my rock of a husband shook up gin fizzes for me, let me manage the Netflix queue, and made a cast of my breast using plaster bandages, so I’d be able to remember what my lopsided, but otherwise perfect-for-me breasts looked like.
Two weeks before the surgery, I required constant distraction. I ate sushi. I watched two seasons of 30 Rock in three days. I put blue streaks in my hair. I bought a new dress. I came home drunk on the train and lost my phone. I let missionaries at the mall talk to me for almost an hour.
Two of my female friends attended the Ta Ta to Tatas party with appropriately low-cut shirts. One of my buddies flew in from Seattle to attend. We devoured the food. Since the procedure I chose used a tissue matrix donated by a corpse and stripped of DNA, we joked about the fact that I was about to have perfect, perky zombie boobs.
Now that I’m on the other side of the operation, I’m glad I did it. Six weeks after the surgery, I’m still healing, and am working on regaining arm flexibility and the ability to lift things that weigh more than Paris Hilton’s dog. My fake new boobs, which some in the BRCA community have dubbed “foobs,” look more natural every day, and they are beginning to feel like a part of me. The idea that I don’t have to live my life in fear of breast cancer has been slower to recede, but it is receding.
Unfortunately, my ordeal isn’t completely over. Ovarian cancer is still dangling over my head like the sword of Damocles. While only 1.4 percent of ordinary women develop ovarian cancer according to The National Cancer Institute, Sloan-Kettering reports that 40 to 60 percent of women with my genetic mutation will develop it. Ovarian cancer tends to be more deadly than breast cancer because it’s harder to detect. Most doctors recommend that women in my situation remove their ovaries before age 40, which means I can look forward to surgically induced menopause. Joy.
I can only hope that by the time my unborn children are ready to confront their genetic heritage, science has advanced enough to offer women like me something other than complete surgical castration before age 40. In the meantime, I have another party to plan. Deviled eggs, anyone?
Lizzie Stark has written for the Today Show site, the Philadelphia Inquirer and, of course, The Daily Beast. Currently, she is working on a book about the hobby of live action role play, or LARP. In her "copious" spare time she edits the literary magazine Fringe, and blogs over at LizzieStark.com.