My BRCA1 Journey: From Uncertainty to a Relentless Reality
Ten years ago, I was told I carried a BRCA1 variant of unknown significance. That phrase—scientific limbo—left me in a gray zone. Not enough data to panic, not enough reassurance to relax. So I carried on, half-alert, half-in-denial, thinking maybe it would never matter.
Fast forward to now: that variant? Reclassified as pathogenic. Just like that, the maybe became a certainty. Cancer risk: real. Action: urgent.
I finally sat down with a genetic counselor, expecting maybe a monitoring plan, some bloodwork, a calm entry into this next phase. Instead, in that very first appointment, I was hit with a double-barreled recommendation: oophorectomy and bilateral mastectomy. Take out your ovaries. Take off your breasts. It felt like being handed a demolition plan for my own body—on the spot, no warm-up, no roadmap. Just medical facts, cold and sharp.
And then came the revolving door of white coats. New oncologists. Genetic counselors. Breast surgeons. Suddenly I had a full medical team and a calendar full of appointments. Every week brought a new face, a new scan, a new anxiety. I wasn’t a person—I was a high-risk profile.
I decided to schedule the oophorectomy first. It was the clearer choice. I’d already had a partial hysterectomy twelve years earlier, so this felt like finishing something already in motion. The mastectomy—especially with the question of reconstruction—was a much more difficult decision, physically and mentally. I needed time. Time to research. Time to feel. Time to face what it would mean to lose parts of myself I’d never questioned before.
The days leading up to the surgery were long and full of anxiety. Knowing, intellectually, that I was making the right decision to remove my ovaries to reduce this particular risk didn’t keep me from worrying about the pain, anesthesia, and recovery. It was the unknowns that rattled me—the sharp edge of fear creeping in. The outpatient surgery was uneventful, the staff all kind and gentle with me. They gave me the rules for discharge and I was ready to meet the challenges immediately and was quickly sent home after surgery. The first couple of days at home were tough, but my family was incredible. I wanted for nothing, and I slept as much as possible. As the days carried on, I gained more strength, and the energy is slowly returning—still.
I had hoped to manage the surgical menopause without hormones, naturally. I figured I’d tough it out—ride the waves, keep it clean, avoid the meds. In the first three weeks post-op, I only had some hot flashes. Manageable. Then, out of nowhere, menopause hit me like Thelma and Louise going over a cliff. No warning, no brakes—just a full-body freefall.
Suddenly, I was acutely aware of my body’s reaction. My resting heart rate, normally a steady 64 bpm, was now racing—20 beats higher for no reason. I wasn’t anxious. I wasn’t scared. There was no external threat. But my body was locked in a fight-or-flight state. Muscles tight, chest buzzing, adrenaline flooding in from nowhere. That’s when it hit me: the hormones had finally run out. My body knew something was wrong, even if my brain was still catching up. It wasn’t gradual. It was like a trapdoor opened and dropped me into the deep end of chemical chaos.
I immediately messaged my gyn-oncologist, desperate for some relief and begging for help. I could feel my body screaming for balance, and I couldn’t wait another moment. She filled the prescription for HRT the very next day, but I knew it wouldn’t be an instant fix. It takes weeks for hormone therapy to start to settle into your system, and even then, I’d be in a constant dance of adjustments—trying to find the right dosage, the right balance, the sweet spot. I’ll be meeting with a new doctor to begin to manage that part of this journey, and I’m holding on to the hope that we find stability quickly. The uncertainty is wearing, and every day feels like a waiting game.
Now comes the hardest question: reconstruction or not? The options are brutal either way. Reconstruction means a longer recovery, a longer surgery, more risks. Going flat comes with its own storm of judgments and internal reckoning. There is no “good” choice. Just damage control. And all up against an invisible threat, that if it rears its ugly head, removes most of the choices from me anyway.
I didn’t ask for this journey. But here I am. And if I'm going through it, I might as well speak on it—because someone else out there is, too, silently drowning in the same storm. The truth is, we don’t talk enough about what this really feels like—not just the procedures, but the identity shifts, the hormonal chaos, the medical overload, the exhaustion of constantly having to advocate for yourself while trying to stay upright.
I’ve been struggling to share all of this with my friends and family because I’ve been trying to keep that brave, steady face—the one that says “I’m okay,” even when I’m anything but. But the truth is, I’m still meeting this new Ada, and I don’t fully recognize her yet. She’s tired. She’s altered. She’s strong, yes—but she’s also grieving. There’s no manual for this version of womanhood, no easy words for what it means to lose parts of your body while trying to hold on to your identity.
So I’m writing this not just to process it, but to put it into the world for whoever needs to hear it. If you’re on this road—newly diagnosed or ten steps in—maybe my words help you feel less alone. Maybe they help you ask one more question, push for the second opinion, take the break, or scream into a pillow without guilt. This isn’t a ribbon-wrapped story of bravery. It’s messy. It’s ongoing. And it’s mine. But I’ll keep sharing it—because sometimes, that’s the only way through. Together, even in fragments, we make sense of the chaos.
Subscribe to get updates and read new stories—whatever’s on my mind, raw and real.