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January 27, 2022

I Got Diagnosed with BRCA-1. Now what?

I am 24-years-old and a few weeks ago I discovered that I have the BRCA 1 gene mutation (commonly pronounced“brah-kuh one”), which greatly increases the risk of contracting gender-specific cancers like breast and ovarian cancer in women and prostate cancer in men.

This came as no surprise given that my mother survived two different kinds of breast cancer. The first she discovered when she was only 28 and the second when she was 38. When she was 41 she discovered she had ovarian cancer, which would lead to her death just two years later at 43. Her mother died from breast cancer at age 74, her grandmother died from ovarian cancer at age 86 and her great uncle died from prostate cancer at age 89.

I grew up well versed in my family history and from a very young age I know there was a possibility I could get cancer at some point in my life. Despite this belief it never quite felt real.

What I didn’t know was that due to my father’s healthy genes I realistically only had a 50% of getting the mutation—a coin toss.

I guess four generations of us have picked tails and it was the wrong side.

According to current medical research, having the BRCA 1 mutation means that I have a 50-87% chance of getting breast cancer and a 60% of developing ovarian cancer. In other words I should assume that I will get it someday.

The recommended course of action—taking into account my desire to be a mother—is to have a bilateral mastectomy and oophorectomy, meaning the removal of both my breasts and ovaries before I reach age 35.

Our family has always been very open with regards to talking about cancer–at least amongst ourselves–which is why I am having trouble understanding my reaction to recent headlines about preventive mastectomies.

Angelina Jolie’s op-ed in the New York Times seems eerily timed and familiar in an uncomfortable way. We are lucky that we talk so much about cancer in this country and yet the way we talk about it really bothers me. We discuss it in such a superficial way—saying or not saying what we are supposed to in public–because we don’t know how to talk about real, complicated, scary things.

My mother passed away when I was 10-years-old and so my experience of her illness and decline is colored by the hopelessly optimistic and painfully short-sighted lens of a child.

What grieves me most about my mother’s death is that I never got to know her as the woman she was and that she would never get to know the woman I have become.

I wasn’t able to chat with her about the mundane or extraordinary happenings of her life.

I didn’t get to hear about her first loves, her worst loves, or her take on how she met my father.

I don’t know what frustrated her or made her giggle, what kept her up at night or why she loved reading murder mystery novels so much.

When people share stories about my mom they are always about how kind and collected she was.

Sometimes I wish that they would tell me stories about how she lost her temper and made grave mistakes—the stories that would make her more human than angel.

To me my mother will always be Mommy—the two-dimensional shadow of a character in a book I have avoided reading for many years.

Now that I have the information about my family’s genetic inheritance I feel torn inside by so many conflicting emotions- sadness, pride, fear, anger, disappointment, exhaustion.

My mother didn’t get advance notice detailing what she would be up against. She found out about her first cancer shortly after becoming engaged and knowing her husband-to-be had not planned for this kind of a life, she brought him the news along with a get-out-jail-free card offering to let him get out while he still could.

To my father’s credit he stuck around and together they survived the first cancer.

Later they bought a house, had a daughter, got a dog and battled cancer again.

The third time cancer reared its head they faced her death together.

I don’t know what she felt, whether she felt shame or anger or power.

I can’t know if she saw herself as a victim, a martyr, a tragic hero or someone else entirely.

I don’t know what brave or cowardly thoughts she entertained.

I can only imagine the part of her that wished she’d never have to tell her 10-year-old daughter that she had chosen to stop fighting the exhausting war against cancer and just live what little life she had left with her loved ones by her side.

What I think I know is that if she had had the same information and the same procedures available to her that I do now, she would have done them all in a heartbeat. And that terrifies me.

Preventative surgery to remove my breasts and ovaries is the smartest choice, especially considering the odds and given that I would still be able to harvest my eggs in order to have children when I am ready later on.

I could even harvest only those eggs that test negative for the BRCA 1 mutation to ensure that my children don’t have to face the decisions I do now.

But smart certainly doesn’t mean easy or simple.

At best I feel cheated.

What about my dreams of naturally conceiving my first born with someone I love?

What about breastfeeding my babies and watching them grow big and strong, their bright eyes looking up into mine from the circle of my arms?

What about my right to motherhood?

I’m so damn angry that I can’t even utter these questions out loud.

And yet I am supposed to feel empowered.

My mom would have done it in a heartbeat, right?

I love my body.

This body, my body, has fought and won tournaments in mud and snow, danced salsa with Latin lovers in tropical countries, climbed mountains, traversed rivers and maybe even saved a life.

Now I am supposed to cut it up like a recalled machine, remove and replace the bad parts of the defective model I was born with.

And I don’t want to make this choice.

I especially don’t want to have to.

But I do have to.

So what am I going to do?

Most likely I will re-prioritize what I invest my time in over the next 5 years, setting aside what I had thought would be my nomadic, roaring twenties. Instead I will buckle down and get working so that I can ensure that I have continuous health care and financial stability. That way I can have kids earlier and undergo the surgeries earlier.

I’ll do this because I want to see my children grow up.

I want to watch my daughter’s first soccer game, take my son to his first day of school, watch them fall in and out of love and hold them tight when my arms feel like the safest place in the world.

I am resilient. I am grateful that I know. And someday I will feel empowered.

But today I am just 24, scared as hell, angry as sin, and feeling terribly lost.

~ Originally written December 17, 2013 (never published)

Update: I spent a year in quiet panic agonizing over what to do until I finally realized that I could not predict the future and that I needed to make the choice that truly felt right to me.

I did not opt to have the preventative surgeries and I am now 33 years old.

I get a breast exam and MRI annually.

I used my diagnosis as a catalyst to not only quit smoking socially, but also as the motivation to overhaul my lifestyle to be much more healthy, realizing that I would rather spend money now on preventative healthy living than on expensive medical procedures later. I am doing my best to live in a way that looks at cancer through a metabolic lens and I highly recommend the book “A Metabolic Approach to Cancer” by Jess Higgins Kelley and Nasha Winters if you want to learn more.

I have also talked with other people who have been diagnosed who decided to move forward with the surgeries and if you are reading this because you are newly navigating these waters, you get to pick whatever path feels right for you.

Take your time.

Trust your choices. They are yours to make.

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