As a nine-year old girl, I had heard the word breast before. And admittedly, most of the time the word would follow with juvenile laughter, just like when a kid would pass gas in class. But on Thanksgiving Day, 2000, the word “breast” preceded the word “cancer” at my family’s dining room table. And the word “breast” no longer generated a childish giggle.
At age 35, my mom was diagnosed with breast cancer. And like any young mother, when she heard the word “cancer” she immediately wanted it out. She saw the first surgeon who would operate on her, and her surgery was scheduled for the following Monday.
Looking back, it seems so evident that we were dealing with a BRCA1+ gene carrier. A young woman diagnosed in her thirties. A maternal grandmother and great-grandmother with a history of breast cancer (although, post-menopausal), a case of ovarian cancer and a case of uterine cancer. Heck, this family history is almost “textbook” for a BRCA positive family. But no one questioned it. After all, one in eight women get breast cancer- and nine out of ten cases are “just bad luck”.
Several surgeries, chemo and radiation treatments later my mom was deemed “cancer-free”. But “bad luck” struck again, less than a year later. My mom reported to her doctor that she had pain in her chest. Her oncologist wrote this off as post-op pain from her double mastectomy. Several weeks later, she decided to get a second opinion about this “post-op pain”. They discovered cancer, again, this time wrapped around her heart and her sternum.
This time, people began to connect the dots. We have a woman in her thirties with a reoccurrence of aggressive breast cancer. There is a family history of breast and ovarian cancer. This cancer is not responding to treatments the way it
is in other patients. Maybe this cancer is hereditary, maybe there is a known genetic link.
My mom went ahead with the genetic testing. I remember her saying “I hope it comes back positive”. And I thought maybe the chemo had made her crazy—so I asked her why. She said, “it would explain why cancer haunts our family.” This coming from an Omaha Police Officer, marathon runner, and sports enthusiast who ate right and exercised, but had always questioned what she had done to give herself cancer.
Several weeks later she received her result, positive for a BRCA1 gene mutation. Her hopes had come true. But now her worst fears sunk into the pit of her stomach, what about her three children, my brother Ben, my sister Bailey, and me.
Eventually the inevitable end was in sight, the cancer had spread to other organs, to her bones, and to her brain. My mom gathered us around her bedside and made us promise that we would be proactive with our health, making the preventative health care decisions she was never given the option to make.
On my 19th birthday, the age of medical consent in Nebraska, I saw a genetic counselor. Several weeks later, I found out I too, am BRCA1+. The difference this time, I knew my risk before a cancer diagnosis.
I immediately began in-clinic breast exams, an annual breast MRI, and transvaginal ultrasounds to screen for ovarian cancer. I took comfort in knowing that not if – but when I developed breast cancer, I would catch it early.
It wasn’t until I had a child of my own that I began to wonder why I was waiting for cancer. There is no way I would sit back and wait for the day my son, Peyton, had to watch me lose my hair, get sick on the couch, collapse in the grocery store because of cancer. It was time to discuss the other options, it wasn’t just MY life I was worried about anymore…
So at age 22, I had a double mastectomy with reconstruction. My lifetime breast cancer risk went from an 87% risk to less than 2%. And at age 35 I will have a full hysterectomy to decrease my risk for gynecological cancers.
Many think removing your body parts because of a “risk” of developing a disease is radical. I often ask people if they have an 87% chance of their airplane falling out of the sky would they get on it? Probably not. You might survive the plane crash, but are you going to take the risk?