It’s hard to believe that, in just one week, I’ll be undergoing a prophylactic bilateral mastectomy. In seven days, I will no longer have breasts. Sitting here, reflecting on my journey since my BRCA diagnosis seven months ago, I find it surreal to think that I’m preparing for this life-changing surgery.
A year ago, I would have never imagined I’d be facing the removal of my breasts. But life has a way of throwing unexpected challenges our way. My journey began last June when I discovered, through a genetic test, that I had a 50% chance of carrying a BRCA2 mutation. My initial understanding of BRCA was limited, mostly shaped by the media coverage surrounding celebrities like Lena, who openly discussed her BRCA1 mutation and proactive surgeries.
Once I learned about my own genetic risk, I dove deep into research. I found out that a positive BRCA mutation test means stepping into the realm of hereditary breast and ovarian cancer (HBOC) Syndrome. Women with HBOC face significantly higher lifetime risks of developing breast and ovarian cancer compared to the average woman. For BRCA2 mutation carriers, the risk of developing breast cancer can be as high as 84%, while the average woman has only a 12% risk.
These aggressive cancers often arise at a younger age, typically before 60, and have a higher likelihood of recurrence. Ovarian cancer, although rarer, presents a grim statistic—27% lifetime risk for BRCA2 carriers, versus less than 1% for the general population. BRCA mutations also increase susceptibility to other cancers, including melanoma and pancreatic cancer.
If you’re feeling anxious reading this, take comfort in knowing that fewer than 1% of the population carries a BRCA mutation, which is notably more common among those of Ashkenazi Jewish descent. For instance, about 1 in 40 individuals from this background have a BRCA1 or BRCA2 mutation, compared to just 1 in 800 in the general population. Moreover, only 5-10% of breast cancers are genetically linked. So, depending on your ancestry, your chances of having a BRCA mutation—or developing hereditary breast or ovarian cancer—could be quite low.
Yet, deep down, I sensed I would test positive for the mutation. While I usually rely on evidence-based facts, this intuition was impossible to ignore. When my genetic counselor delivered the news, I was prepared but still devastated. I took a day to wallow in self-pity before springing into action, devouring medical journals and personal accounts from women facing similar diagnoses. I sought support through FORCE (Facing Our Risk of Cancer Empowered), an organization that has been invaluable throughout this journey.
I scheduled numerous appointments: a breast surgeon, a plastic surgeon, and a series of tests, including a breast MRI. Each completed task gave me a sense of control over a situation that initially left me feeling powerless. Yet, amidst this frantic activity, I discovered some hard truths. I realized how fortunate I had been to enjoy good health until now. I had always assumed I was invulnerable, and this experience shattered that illusion.
Learning about my BRCA status confronted me with my own mortality. Despite my penchant for deep discussions about life and death, this was the first time I faced a specific, realistic threat to my life. The decision to have a mastectomy has been a difficult one, and I continue to wrestle with it. Doctors advised surgery before I turn 40, but I was also given the option to monitor my situation through regular screenings.
I imagined the joy of bringing a child into the world and the potential heartbreak of facing illness. One of my doctors, who specializes in cancer care, poignantly remarked that the notion of getting sick becomes much more frightening after becoming a parent. She shared a story of a BRCA-positive patient who was diagnosed with cancer shortly after childbirth, emphasizing the aggressive nature of breast cancer in younger women.
I often refer to my upcoming surgery in stark terms—”having my breasts cut off.” While some may find this language jarring, I believe it’s important to confront the reality of the situation. The surgery entails the removal of tissue extending from my sides to my collarbone, and while reconstruction is possible, it won’t replicate the natural form. My surgeons have cautioned me that reconstructed breasts typically don’t look as good as the original.
Even though I’ve never been overly attached to my breasts, I’ve been unexpectedly engulfed by grief over their impending loss. I’ve mourned the inability to breastfeed, the loss of sensation, and the impact on my sexuality and self-image. I question how my identity as a woman may shift without them, even as I remind myself that resilience and courage define femininity—traits that will remain untouched.
I understand that my situation is far from the worst. I am grateful for the knowledge I possess, the ability to take preventive action, and the excellent medical care available to me. My support network has been incredible, offering everything from listening to my fears to accompanying me to appointments.
As I count down to surgery, I oscillate between gratitude and sadness. I recognize the privilege of having this choice, which reduces my cancer risk from 84% to just 10%. However, the reality of losing my breasts weighs heavily on my heart. I expected to feel more certain about my decision as the date approaches, but doubts linger.
In the end, this journey is a complex tapestry of emotions—an interplay of gratitude for the options available to me and profound sadness for what I will lose.
Resources
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Summary
The emotional journey of preparing for a prophylactic mastectomy due to a BRCA mutation encompasses feelings of grief, fear, and gratitude. The author reflects on the unexpected nature of her diagnosis, the stark realities of cancer risk, and the profound impact of losing her breasts, all while acknowledging the privilege of having options and support.
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