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?