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My BRCA Story (part 1)

A date is often associated with when our BRCA story began; perhaps it’s the date of the genetic counselor appointment or the arrival of the test results. However, if we peer a little closer, we will see that our BRCA journey began long before.

Reluctantly, I drove to my Genetic Counseling appointment. It was supposed to only be an abbreviated session, so that my sister and I could add in the family health data for our father’s side. We had already completed the cancer riddled maternal family history, and had asked our burning questions when we accompanied our mother just a few weeks prior. We already knew. She is BRCA2 positive.

As I tried to distract myself by flipping channels on my car radio, I suddenly tuned into the fact that nearly every ad or piece of news related to breast cancer. Ugh, it’s October 1st, I realized. “It’s going to be one long, agonizing month of waiting”, I thought.

I had been here before, wondering about test results. Waiting. Worrying. Only these weren’t my tests. They were my mother’s, grandmother’s, grandfather’s, cousin’s, aunt’s, great aunt’s or great uncle’s. All news about cancer: breast (female), colon, lung, melanoma, cervical, skin, prostate, breast (male), kidney & esophageal–multiple cases of most. There was only ONE false alarm, and bone cancer was gratefully avoided.

Like most of my maternal family members, cancer felt like my destiny too. In college I matter-of-factly stated that I was most likely going to get breast cancer; I rationed, if my grandmother, mother and I shared similar curvy physical features and emotional temperament, why wouldn’t we have the same cancers too? (oddly, my mother wasn’t diagnosed with her first breast cancer until 10 years after that justification).

On October 1, 2014, I agreed to have my blood taken and tested for a genetic mutation in my BRCA genes. I didn’t want to. I didn’t want to know. But I had to know once my sister decided to get tested. Sister Solidarity. I actually wanted to be like those people that my mom’s oncologist described in disdain, “You don’t want to just stick your head in the sand like some people and wait for cancer to come around. Then it will be too late.” No, I didn’t want to get cancer. I didn’t want to die from cancer. But I also didn’t want to make big decisions about what to do to try and avoid cancer. That felt impossible, like removing every drop of water from the ocean.

Speaking of avoiding, I spent that October trying to tune out–breast cancer billboards and magazine covers proving unavoidable–and wondering about my BRCA action *if* my test came back positive. I was adamantly certain that I would not do surgeries, unless I had an actual cancer diagnosis. I committed to monitoring and working on my increased, unhealthy worrying. That’s just it. I didn’t even have a BRCA result yet and I was already fixated on cancer. I had 3-4 weeks left to wait.

We must let go of the life we have planned, so as to accept the one that is waiting for us.

~Joseph Campbell

Perhaps, a month of awaiting results is brief when compared to the number of generations that have unknowingly carried this BRCA gene mutation already. Through testing, we verified that my maternal grandmother had the BRCA2 gene mutation; however, both of her parents died while she was still in high school–her father of colon cancer.

When does your BRCA story actually begin?