“Don’t think that because this is happening to me, it somehow means that it can’t happen to you,” my mother told me in the spring of 1972, a few months before she died of the breast cancer that had spread to her ovaries.
As a 17-year-old wrapping up her junior year of high school, I was too busy balancing schoolwork with my aching heart to dwell on those words for very long. Even as I watched the person I loved most slip away, while feeling stunningly alone, I still believed that my own body was invincible.
More than 40 years later, I reacted with recognition and gratitude as I read Angelina Jolie’s op-ed in The New York Times about her “medical choice.” There was my story, or something close to it, spelled out for all to see. Surprisingly, Jolie and I have a lot in common.
Like me, she is a motherless daughter with children of her own; we both carry the rare but potentially lethal BRCA1 gene mutation; and we each have grappled with a painful and complex medical decision.
Unlike me, however, Jolie has not had breast cancer. When I was first diagnosed in 1994, genetic testing was not yet widely available. Six years later, my oncologist recommended that I undergo the test because of my family history and my own breast cancer diagnosis at the unusually early age of 39.
The test confirmed what Mom had suspected: This disease runs in our family. I was at high risk for both breast and ovarian cancer.
The decision to have an oophorectomy [removal of the ovaries] was an easy one. Chemotherapy had already put me into menopause, and the surgery itself, done laparoscopically, didn’t even require an overnight hospital stay. Within a week I had resumed my normal activities.
I didn’t make the decision to have prophylactic mastectomies for another six years. At that point, I had enjoyed 12 cancer-free years. But with time came more data, and my oncologist, who until then hadn’t pushed, started pushing.
She said that like me, many of her patients with the gene were fine for 12 or 15 years. “But anecdotally,” she warned, “some of them go on to develop a second and even a third breast cancer.”
At age 51, my nest had emptied, and I was eager to begin the next chapter of my life—one that had no room in it for another cancer diagnosis. The idea of leaving my sons and husband was as unthinkable then as it had ever been.
The decision to have prophylactic mastectomies seemed almost easy when compared with deciding whether or not to undergo reconstruction and its accompanying complications. (What are those complications? See The New York Times’s informative article, “No Easy Choices on Breast Reconstruction.”)
When sharing my thoughts with one friend, I characterized the issue as a choice between leaving the hospital with breasts or without them. “Of course you want to leave the hospital with breasts!” she countered.
She was right. But I didn’t want implants, because they have a shelf life and would require more surgery later on. And I definitely didn’t want a procedure that would negatively impact my ability to be physically active. Some procedures steal abdominal muscles—making it difficult to get out of a chair without help, for example.
Instead, at the suggestion of the hospital social worker, I opted for the DIEP Flap procedure, which takes skin, tissue, and blood vessels from one’s abdomen and uses them to create breasts. At the same time the breast surgeon is performing a skin-sparing mastectomy, the plastic surgeon is harvesting the above-mentioned elements for reconstruction.
The operation takes about 10 hours and requires 5 days in the hospital. I went home with a total of four drains attached to my new breasts and abdomen. As Jolie writes, “It does feel like a scene out of a science-fiction film.” The drains were removed one or two at a time during follow-up visits to the plastic surgeon.
Six weeks after surgery, I went back to work, wearing control-top panties to support the abdominal incision and specially treated pads on my breasts to help the blisters—a normal occurrence after this type of surgery—heal with minimal scarring.
The procedure also includes a day surgery to create nipples, and an office visit to tattoo on the color. (I’ll never forget standing shoulder to shoulder with my plastic surgeon, poring over a card of color swatches, trying to select just the right shade of tan.) I viewed the three-step process as a short-term time investment to achieve a long-term, permanent solution that would significantly reduce my risk of another cancer and allow me to enjoy an active life.
For nearly seven years, that has been the case. The heavy cloak of fear that had burdened me for decades is gone. When I look in the mirror, I see myself as I am. I don’t think about what has been replaced. Sometimes I’ll notice another woman’s breasts while changing at the pool and remember what I once had, but there is no regret. And since Jolie announced her surgery, I feel less self-conscious about the evidence left from mine.
And what do I see in the mirror? I have a faded but visible scar that goes from hip to hip. The breast shape is natural and a bit more youthful than before. There are no noticeable scars. In spite of our careful color choice, however, the nipples won’t fool anyone. They have flattened out and faded over time—a result I was warned about because it was common to the procedure available at that time.
A few weeks before Jolie’s op-ed was published, I was connected through a program at the hospital with a woman about to undergo the DIEP Flap procedure. Since my surgery, I’ve had several telephone conversations with women in this situation. They want to know what to expect and to hear it from someone who has been where they are. Doctors can outline the process, but they often leave out details that take patients by surprise. By sharing my own knowledge and feelings with these women, I help alleviate their anxiety.
Some medical professionals are concerned that Jolie’s admission will set off a panicky wave of unnecessary genetic testing. But I’m convinced that the good outweighs the bad here.
By talking about our experiences, we normalize them for others. My mother underwent a mastectomy three years before First Lady Betty Ford publicized her own. Until then, the words “breast cancer” were uttered in whispers. Women like my mother suffered in silence and, I fear, in isolation.
When women like Ford, Jolie, and even non-celebrities like me raise our voices, we’re saying, “We’re not so different from you—and you are not alone.”