Upon learning of my own risk, I devoured every piece of research and literature on the topic. I learned that testing positive for a BRCA mutation meant entering the world of hereditary breast and ovarian cancer (HBOC) Syndrome. Women with HBOC carry a significantly higher lifetime risk of developing breast and ovarian cancer than women in the general population. Though the exact risk figures vary, BRCA2 mutation carriers have up to an 84% lifetime risk of developing breast cancer, as compared to a 12% lifetime risk for the average woman.
Additionally, these breast cancers tend to occur at a younger age (whereas the majority of breast cancers occur after age 60), to be more aggressive, and to have higher rates of reoccurence. The risk of ovarian cancer, one of the rarest but deadliest cancers, is lower: 27% lifetime risk for a BRCA2 mutation carrier, less than 1% for those in the general population. BRCA carries elevated risk for other cancers, as well, including melanoma, pancreatic, and prostate cancer.
If you are breaking into a sweat reading this, it may help to know that fewer than 1% of the population carries a BRCA mutation. BRCA mutations are more common among the Ashkenazi Jewish population. According to the CDC, approximately 1 in 40 individuals of Ashkenazi Jewish ancestry have a mutation in the BRCA1 or BRCA2 gene, as compared to 1 in 800 (or 0.125%) of individuals in the general population. Additionally, only 5-10% of breast cancers are genetically linked. My point is this: Depending on your ancestry, your chances of having a BRCA mutation, or of getting hereditary breast or ovarian cancer, are likely low.
Somehow, I knew in my gut that I would test positive for the mutation. I’m usually not a “woo-woo” person–I tend to favor the cold, hard facts of evidence-based research. And yet, somehow, I just knew. I wasn’t surprised when the genetic counselor called with my positive test results (though I was surprised when, in describing my options for childbearing, she suggested that I “could always adopt” or “just not have children” in order to avoid passing on my mutation).
I wasn’t surprised, but that doesn’t mean I wasn’t devastated. I spent a day in bed, crying and feeling badly for myself. Considering my options, and not liking any of them. Eventually, I kicked into action mode. I consumed medical journals. I read women’s personal accounts of being diagnosed with BRCA. I acquired a peer mentor and attended networking events through FORCE (Facing Our Risk of Cancer Empowered), an organization that has been incredibly helpful to me throughout this process. I researched specialists. And I scheduled appointment after appointment after appointment: The High Risk Breast Clinic.
My first mammogram.
The High Risk Ovarian Clinic (which I will continue to visit every 3 months until I have my ovaries removed).
A breast surgeon. Another breast surgeon, because “it’s important to get a second opinion,” according to the books I consulted.
A plastic surgeon.
A breast MRI.
As with any project I’ve ever undertaken, checking these action items off my list gave me great satisfaction. With every task I completed, I gained a sense of control over a situation in which I’d previously felt powerless.
Outside of my manic, goal-driven behavior–which alternated with occasional periods of self-pity–I came to realize some previously undiscovered truths. The first was that, up to this point in my life, I have been spoiled with good health. I still am spoiled, given that I don’t have cancer. Before BRCA, I took normal test results for granted. Despite my anxious tendencies, I assumed that everything was fine–and that everything would continue to be fine. And, despite witnessing others’ medical hardships, I failed to recognize my own vulnerability.
Every single one of us has a predisposition to something or another–I just happen to have a name, and scary statistics, to go along with mine. Ultimately, finding out my BRCA status brought me face to face with my own mortality. Although I have a penchant for heavy discussions and depressing books–and though I have often considered the possibility, and eventuality, of my own death (#sadsquad)–this is the first time I’ve grappled with a specific, realistic–and perhaps even probable–way in which I might die.
I wrestled long and hard with the decision to have a mastectomy. I am still wrestling. Doctors recommended that I have surgery by age 40, but I was given the option to monitor my breasts with mammograms and MRIs until then. Breast cancer is often very treatable when it’s caught early, and initially, I thought I might go the monitoring route.
I haven’t had a child yet and have always imagined breast feeding. “I would likely be okay if I waited to have surgery, right?” I asked this of myself and of others. Maybe I would be okay, but maybe not. Who’s to say I wouldn’t be one of the mutation carriers diagnosed with aggressive cancer in my 30s? I am no different from the many women who already fall into this category–if I’ve learned anything from this experience, it’s that I am not that special.
Statistically, BRCA2 mutation carriers are more likely to be diagnosed with breast cancer in their 40s than in their 30s. Statistically, I’m more likely to stay cancer free in my 30s than I am to be diagnosed with it, even with my BRCA mutation. But statistically, I shouldn’t have this mutation in the first place. I used to take comfort in statistics, but they no longer provide me with the same level of reassurance. Because of this, I had to consider the possibility of breast cancer in my immediate future.
I imagined bringing a child into the world and being overwhelmed by love and by the immense sense of responsibility for this little person’s life. And then I imagined getting sick, and I imagined dying. One of my doctors shared that, since giving birth to her first child, the idea of getting sick has become much scarier. This doctor works with cancer patients every day, and she is forced to consider this possibility. Though she acknowledged that she could not predict my personal chances of getting breast cancer in the next few years, she was also straightforward about what she does know for sure: Breast cancer that occurs in one’s 30s tends to be highly aggressive, and it tends to have a high rate of reoccurrence.
My doctor told me about a 35-year-old BRCA+ patient who was diagnosed with cancer shortly after having her first child. She underwent treatment and was in remission for 4 years. At 40, the cancer came back, and this time, it metastasized. She died within a year of her second diagnosis. My doctor told me that, though she is an advocate of breastfeeding, she would have a mastectomy if she were in my position. “5 years of being a parent just isn’t enough,” she said.
I’ve occasionally referred to my upcoming surgery as “having my boobs cut off.” Though this may sound like an overly aggressive way to describe a mastectomy, the surgery does involve the removal of body parts. Though it’s impossible to remove all breast tissue, the surgeon will cut out as much as possible–extending out to my sides, and up to my armpits and collarbone. Because my nerves will be cut in the process, I will lose sensation in my breasts.
My plastic surgeon, who has done 4,500 of these surgeries, was upfront in telling me that “reconstructed breasts never look as good as natural breasts.” And, despite my hopes of finding a silver lining–the possibility of the bigger boobs I’ve wanted so badly since 5th grade–both of my surgeons have said this may not be possible, thanks to my thin skin. So, it feels good to describe my mastectomy in a non-euphemistic manner. It’s not something that I want to shelter myself or others from by using non-offensive, clinical language. A few people have asked me to stop using my chosen terminology, and while I understand their discomfort, I don’t want to stop. I’ve been digesting the reality of what awaits me for months, and–maybe unfairly–I want to force this reality on those around me. When I wake up from surgery next Thursday, I will no longer have breasts. My breast surgeon is going to cut them off. My breasts, which right now hold the potential to nourish a child, or to kill me, will soon be disposed of as medical waste.
Though I have intact breasts at this moment, I have been grieving their loss for months. I’ve spent a great deal of time looking at them, touching them, attempting to seal in my memory what it feels like to have them as part of my body. As a flat-chested woman, I never particularly cared about my boobs, beyond wishing they were bigger–so I have been completely caught off guard by the power of my grief over these body parts. “It shouldn’t matter this much,” I’ve told myself. And yet, it does matter.
I have grieved losing the ability to breastfeed, and I have grieved losing sensation. I have grieved what my breasts bring to my sexuality, and I have grieved my appearance. I have grieved myself as I currently am–and soon, no longer will be. I have grieved my womanhood. What do breasts have to do with womanhood, anyway? “Nothing,” I would have told you, before all of this happened.
In an interview before her preventative mastectomy, Alejandra Campoverdi, a former White House aide under President Obama, said that breasts are not cornerstones of our femininity. “Rather, it’s our resilience, our grit, our courage” that define us as women “and those things aren’t being removed. If anything, they’re being stoked.” I want to believe this. In fact, I absolutely do believe it. Yet, there’s also a part of me that fears I will feel like less of a woman when I wake up without breasts.
I recognize that my situation could be much worse, and I recognize that many, many people face far more difficult challenges than the one that I am facing. I recognize how extremely privileged I am to have this information about my genes, to have the resources to do something about it, and to have access to high quality medical care. I recognize how lucky I am to have learned this information when I did–as a young and healthy woman, rather than in the aftermath of a cancer diagnosis. And I recognize the significant power of my support network. My friends and family have stepped up to the plate in every way imaginable, from listening to my arguments for and against surgery (over and over and over), to taking time off work to go with me to appointments, to simply sitting and bearing witness to my fear and my pain.
Over the past months, I have experienced an immense sense of gratitude for all of these things. Surgery will reduce my risk of breast cancer from 84% to 10%; how can I not feel thankful to have this option? I am overwhelmed by gratitude, for many reasons. Yet, at the same time, I am angry that I have to make this choice, and I am so very sad that I will lose my breasts. I suppose that I am equal parts gratitude and grief–two halves of the same truth.
I expected to feel more confident in my decision one week out from surgery, but I still carry some intense doubt. Am I rushing this? Is it right? Will I regret it? One of my very brave friends, who has been through multiple harrowing health crises with her daughter, told me it’s normal to feel scared and unprepared in the time leading up to a major medical event. She also assured me that I will feel ready when the time comes.
I suspect that my friend is right, not just because she usually is, but also because I know myself fairly well. I will go into surgery strong. I will carry my doubt and grief with me, but I will be ready. And though I may not come out on the other end immediately feeling courageous, I will get there. With time, and with healing, my doubt and grief will become resilience and grit–and maybe, just maybe–I’ll become, and even feel like, more of a woman than I already am.