Facing the Fear of BRCA and a Family Breast Cancer Legacy

Angelina Jolie revealed yesterday that she had a preventative mastectomy after discovering that she is a carrier of one of the BRCA gene. The news hit close to home. The timing seems relevant so I thought I would share my BRCA story.

La Jeune Mariee 490Bored during a stupefyingly hot summer afternoon, my cousin and I decided to spy on my grandmother Lola. We wiggled our eight-year old bodies feet first under her bed and began to wait. Sunlight snaked through the slats of her wooden shutters into the darkened room and dust danced in the makeshift spotlights. My grandmother’s room wasn’t exactly off limits, but it was generally understood that we needed a good reason to enter her inner sanctum. We usually saw no reason to violate her privacy, but that day, we were on a mission. It wasn’t until we were committed and hidden that I began to question the purpose of our mission.

I turned to my cousin as best as I could under the heavy slats of my grandmother’s antique wooden bed and asked him to explain again what we were hoping to see in our spying mission. He whispered back that we wanted to see her put on her breasts. “Put on her breasts?” I asked, “Why does she need to put on breasts? Doesn’t she have breasts on her chest, just like our moms?” He looked at me, surprised that I didn’t know this family secret. “Don’t you know? She lost her breasts. The cancer took them.”

Our mission was soon aborted by boredom and we slivered out of my grandmother’s room a little dusty but unburdened by the guilt of committing a hideous violation of my grandmother’s privacy. But even without seeing her prosthetics, I never looked at my strong grandmother the same way again. The following summer, my breasts took on a life of their own, rubbing painfully against inflatable mattresses and a great source of entertainment for my male cousins. It was my first time feeling truly different as a woman, and I spent many hours wondering about “le cancer” that had robbed my grandmother of her breasts, wondering if it would one day rob me of mine.

Twenty years later, the cancer struck again, burrowing deep in the breasts of my mother and two of her sisters, all in one year. With varying degrees of mutilation, chemo, and radiation, all three sisters survived their bout with breast cancer, but a double mastectomy is nothing like a breast augmentation. Breast cancer is a disease that left scars worse than I ever imagined.

Knowing our legacy of breast cancer, I debated whether to get tested for the BRCA genes for over a decade. I feared losing health insurance coverage if the test was positive. I feared having to undergo painful operations that would rob me of my breasts and possibly my ovaries as well. The fear was overwhelming, and I postponed the test over and over again. I viewed my breasts as not only a source of nourishment for my children, but also a threat, two blobs of fat that would inevitably make me sick. What made me a woman and a mother, also made me vulnerable and far too mortal.

The odds of a woman in the general population developing breast cancer are 12%. The odds of a woman with the BRCA1 or BRCA2 gene are 60%. The odds for ovarian cancer are 1.4% for women in the general population and jump up to 40 to 60% for those with the BRCA1 or BRCA2 genes. There is also increased risk of cervical, uterine, pancreatic and colon cancer.  (Cancer.org Facts on BRCA genes) Angelina Jolie’s risk was 87% for breast cancer and 50% for ovarian. The odds vary for each woman.

Finally, two months ago, my ob made the decision for me. He interrupted our third long discussion of the pros and cons of getting tested and told me, “You need to know. The result will affect the medical decisions we make for you. For your family, for your daughters, you need to know. We’ll do the test, right now, in the office. It will take you five minutes, and you’ll finally know.”

Waiting for the results was the hardest part of being tested for the BRCA gene. It took six long weeks to get a quick call from my doctor’s office, informing me that I was not a carrier of the BRCA gene. I was pulled over at a red light, in the middle of the chaos of after school activity car pools, and I suddenly felt like this huge weight I had been carrying on my shoulders for years was lifted from me. No BRCA gene. No preventative mastectomy or hysterectomy. No passing on a legacy of fear to my three daughters.

fight-like-a-girl-21-300x274My family and I are finally free from the fear of BRCA. My vigilance against breast cancer hasn’t changed. I still do routine breast exams and yearly mammograms, but I sleep easier, knowing my odds are a little lower, knowing that any action I take will be reactive rather than radical and preventative. I am glad I waited as long as I did to take the test, waited to feel like my family was complete, but facing that fear, and finally knowing where I stood in the genetic lottery has been one of the most wonderful gifts I’ve ever received.

“Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.” – Angelina Jolie



7 Responses to Facing the Fear of BRCA and a Family Breast Cancer Legacy

  1. Thanks for sharing this Vanessa. As a genetic counselor, I wanted to add that the best way to find out the most information is for a family member with breast or ovarian to have BRCA1&2 testing first. I can’t tell from this or your other posts if your mother had genetic testing first, but only if a BRCA mutation is found in an affected person and the same mutation is not found in you, are you at the same risk as the general population. You might still appreciate reviewing your family history and test results with a genetic counselor. Best wishes for your family!

    • Dear Sara,
      Thank you so much for your comment. My mother elected to not be tested for the gene so we do not know whether it did not carry down to me or whether our family is plagued with breast cancer without BRCA1 and BRCA2. I’ll definitely make an appointment with a genetic counselor to better understand my specific risks, even without having the BRCA genes. Thanks for the suggestion.


  2. I remember discussions of this years ago in our dear writing group. So happy to hear your results and also to be transported back in to the wonderful stories of your childhood. I miss hearing those tales!

  3. I cannot imagine the enormous weight lifted off of you with these results. Such an incredible blessing. Thank you so much for sharing your experience and feelings on this difficult topic.

  4. My 42yo ex just found out she has breast cancer. There is no history of it on either side of her family but we have a 9yo daughter and she’s getting tested for BRCA. We haven’t told our daughter about BRCA but she knows her mom has cancer and has already asked, unprompted, if that means she’ll get it too.

    Thank you for sharing your story, I’m glad to know that your family has survived, scarred as you may be. It’s always good to hear stories of survival.

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