by Cori Berg
“You are BRCA2 positive,” the genetic counselor stated. I expected it, but it still stung—for my sister, my parents and the rest of my family. How do I tell them? Newly married and five months in, I had no children and no known family history of the BRCA2 mutation. I sat, staring ahead, listening as the counselor explained my options. I already knew what I wanted to do, but I listened anyway.
At age 25, my lifetime risk for breast cancer was up to 85 percent. I could opt for increased surveillance until I was ready for a prophylactic bilateral mastectomy (PBM). Dense breast tissue makes early detection difficult, while a PBM significantly reduces breast cancer risk for those at high-risk like me. Choosing surgery would drop my risk below average. Instead of planning something fun at this age, I faced a life-altering decision.
The genetic counselor also reviewed my risk for ovarian cancer and melanoma. It was so much information; it was like a tornado in my head. At this age, my primary concern was my breasts; the rest would have to wait—sorry, ovaries!
BRCA2 in my family
My Aunt Rose, my mother’s only sister, was beautiful and kind; her smile lit up any room. I remember her battles when she was diagnosed with breast cancer in her early thirties: severe nausea from chemotherapy, a unilateral mastectomy, remission, then a second diagnosis and a bone marrow transplant.
I’m grateful for my opportunity to make informed choices, yet my heart aches for Aunt Rose and her daughter, who lost so much too soon. Removing my breasts would significantly decrease my cancer risk, thus increasing my time with my husband, family and future children. Unfortunately, Aunt Rose was never had genetic testing and did not know about her high risk of recurrence. I believe that if she had known, she would have been empowered to make proactive choices, and she would have made the same choice I did—a PBM instead of a unilateral mastectomy. Instead, a recurrence took her life in her forties; she never saw her daughter graduate from high school.
After my genetic testing, my mother and sister were also tested and learned that they too, have the BRCA2 mutation.
Everyone had an opinion about my decision
Opinions, opinions, opinions! Everyone seems to have a view of what’s best, and it’s confusing. If you are in a similar situation, be prepared for unsolicited opinions about your body and choices. I got used to saying, “I appreciate your support, but I can’t process that information right now.”
A medical professional at the small hospital where I worked cornered me, pleading for me to reconsider my decision because “breasts are part of our womanhood.” I felt uncomfortable as she clutched her oversized breasts. At that moment, my breasts felt like the enemy, not the essence of my womanhood. I didn’t have a strong connection to them, so her comments—though not reflective of my thoughts—lacked professionalism and empathy for my experience. I doubt she had ever witnessed the pain of watching a loved one endure cancer.
Following through with my decision
My PBM was scheduled for the month following my BRCA2 diagnosis. It was a quick diagnosis-to-surgery timeframe, but I was serious about reducing my risk. In 2010, PBM wasn’t common for someone my age, and I didn’t know anyone else with a BRCA mutation. I felt isolated. The term “previvor,” coined by a Facing Our Risk of Cancer Empowered (FORCE) member, described me: someone living with a cancer predisposition but not diagnosed.
I was still 100 percent sure about my decision. My only loss was my inability to breastfeed my future children. People randomly advised waiting until I had kids, but although I cited statistics and they claimed to understand, I don’t know if they understood. I remember the words “drastic,” “invasive” and “young” swirling around in my head, but I couldn’t be stopped. I have a strong faith and I strive to stay positive, but before my BRCA disclosure, I felt like my breasts were out to get me. I told my husband, “It’s just a matter of time.”
On the day of my surgery, I met many people in the preoperative room—nurses, doctors, anesthesiologists. The beautiful plastic surgeon grinned and said, “It’s time to mark!” I opened my gown, seeing my breasts one last time, and felt the marker on my skin. I’d never look the same again, and I was okay with that. In the operating room, the anesthesiologist had me count down from three. The next thing I knew, I was being taken to the recovery room where my mom and husband were waiting.
A month later, during my mother’s surgery, DCIS—ductal carcinoma in situ—was discovered in her ducts. That’s how Aunt Rose’s cancer began. They removed my mom’s breasts, and she didn’t need chemotherapy. Thankfully, she’s still here today, as vibrant as ever!
Having a baby
Three years after my surgery, I was pregnant. At 29, I had my first baby. I felt “older” by some standards but didn’t care. My father-in-law was dying of melanoma; my husband wanted him to meet our child. Sadly, that wasn’t how it worked out, but he did get to feel our baby kick in my belly.
I could have waited longer to have children. I went back to school for nursing, but part of having a high-risk gene mutation involves making complex decisions, which can add time pressure. In a society where women increasingly delay childbearing due to higher education and establishing a career, we have to consider these realities. I planned to have children and undergo a salpingectomy (surgical removal of one or both fallopian tubes) before age 40. This surgery is a preventive measure for those at high risk of developing ovarian cancer.
My experience shaped my future
This monumental moment in my life inspired me and set the trajectory for my career. Despite the growing awareness of BRCA and other high-risk breast cancer mutations, I struggled to find resources for women like me—those who’ve made the tough choice to have a prophylactic mastectomy and need support in their postpartum journey. I became a registered nurse and worked on the same unit where my mother, sister and I recovered. In addition to helping my mother and sister recover from surgery, I helped many other patients after breast and related surgeries. I now work in genetics, where I help develop education for patients and providers to understand and teach others about genetics. My most recent effort was developing information on previvors and sensitivity during postpartum care.
As a previvor, I still have regular check-ups, and yes, I’m blessed. My journey has taught me the importance of empathy and understanding in healthcare. I now dedicate my career to ensuring that every patient feels seen and supported, just as I wished to be.
Corinne Berg, MSN, RN, PHN (Cori) is a Master’s-prepared Registered Nurse at Mayo Clinic and an appointed Instructor in Nursing at the Mayo Clinic College of Medicine and Science. Passionate about health education, she is dedicated to empowering patients and communities with knowledge drawn from personal experiences and education. Additionally, Cori contributes as a science writer for FORCE.