I had a preventative double mastectomy at 32, and no, I don't have the BRCA gene
Tick, tick, tick.
That's the sound I heard in my head for years, every time I looked at myself braless in the mirror or worked up enough courage to give myself a breast self-exam in the shower.
It was the tick of what felt like a timebomb sitting on my chest, waiting to explode.
Breast cancer.
It had been on my mind almost every day of my life from the time I was a teenager, when I began to fully understand the battle my own mother fought and the possibility that I too may have to fight my own war against the same disease. A disease that has truly plagued my family.
On April 1, 2024, I walked into an operating room . I elected to have a preventative double mastectomy, removing my breasts in hopes of eliminating the possibility of a breast cancer diagnosis in the future.
Inevitably, when I tell someone I had this surgery or was planning to get it done, the response is almost always the same. "Oh, so you have the BRCA gene, right?"
My answer is always the same: "No, I just have an absolutely terrible family history of breast cancer."
In fact, I don't have any of the known breast cancer-causing genes that can give someone an incredibly high likelihood of the disease.
What my individual profile does indicate is that I may be at a high risk of developing breast cancer, given my family history and my ancestry.
My paternal grandmother developed the disease in her 70s, my maternal grandmother in her 50s and my mother developed the disease at the young age of 39. None of them have any of the known breast cancer-causing genes either. Thankfully, all of them are still alive today.
I was in 5th grade when my mother was diagnosed and can vividly remember all of the treatment she went through. The surgeries, the chemo, the hair loss, the radiation. All of it.
My mother was (and still is) a homemaker, taking care of my younger brother and me while my father worked a demanding job. She did everything for us, and then suddenly, in the blink of an eye, she couldn't.
For years, I would say to my mom, "I just know I'm going to get breast cancer one day." She would always respond accurately by saying, "Just because it happened to me, doesn't mean it will happen to you."
She is right, but regardless, I felt like the odds were stacked against me.
Women with a strong family history of breast cancer may be at high risk of getting the disease, according to the U.S. Centers for Disease Control and Prevention. Overall, around one in eight women in the United States will get breast cancer during her lifetime, the CDC says.
Around the age of 25, I started to get serious about my breast health. A fellow producer at ABC News at the time, who was just a couple years younger than me, had a BRCA diagnosis and decided to get a preventative double mastectomy.
Watching her share her story was inspiring and empowering. If she could make such an important decision about her body, so could I.
I wish I could say that my journey to my decision to remove my breasts was an easy and straightforward one, but it was anything but that.
The first doctor I found was at a renowned New York City hospital, known for their specialized cancer treatment. They had an intensive breast cancer surveillance program, and due to my family history, I thought I would be the ideal candidate.
Instead, the doctor told me she thought I needed to see a psychologist. I left discouraged and crying.
It wasn't until a year later, after meeting with a young group of women facing similar issues, that someone in the group pointed me to a different doctor.
After months of waiting for an appointment, I finally got in to see my new oncologist, Dr Julia Smith at NYU Langone Health. She listened to me and validated my feelings. She agreed that given my background, I should be under intensive surveillance for breast cancer.
Although I was relieved, the intensive surveillance takes a toll on you. Every six months, I was either getting a contrasting MRI of my breasts or an ultrasound and mammogram, holding my breath for the results each time.
When I turned 30, I got pregnant with my daughter, Reese. My husband and I were elated, but being pregnant meant that some of my breast cancer surveillance could not be at the same level it had been previously.
As any new parent will tell you, after having a baby, your perspective on almost every aspect of life changes. So did mine, and my anxiety about getting a breast cancer diagnosis was only amplified.
The thought of my own child potentially having to see me undergo cancer treatment, the way I did with my own mother, was almost too much to bear. After 12 months of breastfeeding and dealing with clogged milk ducts that felt like lumps in my breasts, I'd had enough.
Over the years of surveillance, I had told my doctor that I felt strongly that I eventually wanted a preventative double mastectomy. For a while, she pushed me to just continue my surveillance. I agreed as it had never felt like the right time both personally and professionally. Plus, I had no genetic mutations, there was no clear cut answer on deciding to have the surgery or not.
But this is the thing. Surveillance is exactly what it sounds like, just surveillance. It does not reduce your risk of developing breast cancer. It only helps to hopefully catch the potential breast cancer at a stage that is survivable with treatment.
So when my daughter was 1 1/2 years old, I told my oncologist I was really serious about this surgery now. She agreed.
Lucky to live in New York City with some of the best health care in the world, coupled with great health benefits, none of which I take for granted, I had access to top-rated breast surgeons -- an amazing medical team, led by women.
After careful consideration with my team, we decided that my surgery would be split into two parts.
The first included full removal of my breast tissue, while sparing my nipples to give me some semblance of normalcy and putting in expanders as part of reconstruction. The expanders would stretch my skin and create room for my implants, which I eventually had put in during a second surgery four months later.
The first surgery was rough. I felt like a bus filled with screaming children had just run over my chest. But the relief that came with the surgery was undeniable. I was in pain, yes, but the pain was temporary and wasn't coupled with any additional cancer treatment. I was finally a "previvor." I was one of the lucky ones.
I am now two months post-op from my second surgery, where I exchanged the expanders I received during my first operation for implants. A much easier surgery than the first.
Although I joke now that my boobs will perpetually be "perky" for the rest of my life, when I think back about all that I've gone through these past seven months, all I feel is immense gratitude -- grateful for my family and friends for the endless support, grateful for an employer that gave me all of the time I needed to recover, and grateful for the relief I feel now that this is behind me.
Rachel Katz is a New York-based coordinating producer for "ABC News Live."
