IT HAPPENED TO ME: I Took The BRCA Test And Was Devastated By My Negative Results

A lot of people didn’t understand my reaction to my results, and I’m sure a lot of people still won’t.
Author:
Publish date:
September 25, 2015
Tags:
Tags:
IHTM, BRCA Mutation, BRCA

I am the daughter of a scientist. In fact, I am also a sister, cousin, and niece of scientists.

Even though I don’t work in that world (I’m a marketer through and through), I still think like a scientist. I need answers. I crave them. I always ask a ton of questions, whether it’s at work or with my friends.

So when I finally decided to get tested for the BRCA gene, I thought I would get the answers I needed about my mom.

To understand this story, let’s backtrack to high school. When I was 15, my mother succumbed to breast cancer. It was her 3rd recurrence of the disease. The first time she was diagnosed, I was young—about 6.

The second time, I was in 5th grade. I remember visiting her in the hospital after surgery, people bringing over lots of food, and my mom picking out a wig. So when my parents told me that her cancer was back, I cried. A lot. And then I told her that she would beat it. She died 6 months later.

After my mom died, I went into “taking care of business” mode. My brother was only 12 and my dad did the best he could. I decided it was up to me to keep our family dynamic together—a responsibility that I shoulder to this day. I am often the family mediator, party planner and holiday card sender. All family news and gossip filters through me.

Following the “get stuff done” phase was depression. I was sad all the time. I figured that good things couldn’t happen to me and if they did, it wouldn’t last. My wonderful, beautiful mother was gone for no reason. There was no reason for anything.

After some soul-searching and therapy, I started to get happy. And then I met my boyfriend, John. We fell in love fast and hard and 6 years later we are still together and happier than ever. It was because of our future that I decided to take the BRCA test.

I first learned about the test from my doctor, when I was in college. While I understood the reasons why I should take the test, I wasn't sure if I truly wanted to know the results. So I decided against it. I would be extra careful and monitor my body through self exams.

However, after John and I had been in a serious relationship for several years, and were discussing kids and marriage, I knew that I needed to take the test. I had to know if cancer was in my future. I couldn’t bear the thought of putting John and our future children through what my family endured if I could avoid it.

So in January of 2013, I finally made the appointment with the genetic counselor, got a blood test and waited.

The two weeks I waited for the results were awful.

I went through every scenario in my head. I tried to plan out when I would be able to get my surgery before I was kicked off my dad’s health insurance. I knew without a doubt that if my test came back positive, I would get a prophylactic double mastectomy. I joked with John that he could pick out my new boobs.

I kept saying, “They’ll never droop! I can finally go without a bra!” I tried to find the humor in the terrible situation that I was sure to face.

Then finally, the day came to learn my results. My heart was beating out of my chest during the whole car ride. I squeezed John’s hand as hard as I could and when the genetic counselor told me my test was negative, I burst into tears. I called my dad and couldn’t stop crying.

“It’s negative,” I bawled into the phone. “I can’t believe it’s negative!”

“Why are you so upset?” he asked. “This is a good thing!”

I could hear the relief in his voice. After all, this was one less woman he loved who would have to deal with cancer.

Deep down, I know it is a good thing. I know that it is an amazing thing to know that I do not have a 90% chance of being diagnosed with breast cancer. I know that it is a great thing that more likely than not, I won’t leave my future children without a mother.

But I was devastated to learn that my mom died for nothing.

We still don’t know why she developed breast cancer at 36 and died a month before her 47th birthday. I thought that if my test came back positive, at least I would have some answers. I thought I would understand why my mom’s life ended the way it did.

Now I think about how my future children will only know their grandmother through photos and the stories I tell them.

Even though my test was negative, I am still considered high risk. I don’t have the gene, but since my mom was diagnosed was so young, I have to take extra precautions. This means yearly exams with a specialist, yearly mammograms (surprisingly, not as bad as I thought), and even yearly MRIs (I haven’t done this yet because of anxiety issues).

I often feel like I’m in limbo because I don’t need preventive treatment but I need more than regular screenings. Some doctors treat my situation seriously, and some brush it off without much concern. I have yet to find a physician that I trust and feel comfortable with.

Later that year, Angelina Jolie published her famous Op-Ed piece in the New York Times titled “My Medical Choice,” which described her experience taking the BRCA test, and ultimately undergoing a double mastectomy. When I read her article, I cried for days.

Most of my friends and family didn’t know I took the test, so when Jolie’s story came out, everyone asked me about it.

“Will you take the test?”

“If Angelina Jolie can do it, so can you!”

They didn't know that I beat Jolie to it.

For awhile after my test, I was so sad and angry. I would read message boards filled with people that called themselves “previvors,” meaning they took the BRCA test, were positive and took action. They beat the disease before it happened.

I devoured books and blogs and anything I could get my hands on that chronicled this journey. I found myself becoming jealous—not of their situations, but of the knowledge of their futures.

A lot of the women talked about the power of taking back control. I wanted that power. I wanted that knowledge. It was what I wanted from the start, and I couldn’t get it, and I was heartbroken. I still am to this day.

A lot of people didn’t understand my reaction to my results, and I’m sure a lot of people still won’t. Most people say that I came out on top. I’ve tried to make it clear that I wasn’t upset because I wanted the gene, I was upset because there is still so much unknown.

I try to remember that I am lucky—that I am here, and happy and healthy. I have a wonderful partner and we have a great future together. I try to channel my sadness into something positive, like volunteering with the American Cancer Society, to raise funds for more medical advances like the BRCA test.

Most days, however, the threat of breast cancer and the memory of my mother lingers in the back of my mind. I take things day by day and try to make my mom proud. BRCA gene or not, I’m still here.