Navigating genetic testing and previvorship: Taylor Harris
In her book This Boy We Made, author Taylor Harris’s son Tophs is a toddler when he begins to demonstrate troubling symptoms, and Taylor, who is Black and has generalized anxiety disorder, grapples with questions of racism and self-doubt throughout Tophs’s medical and educational experiences. As she seeks answers for Tophs’s mysterious illness, she embarks on a journey in which she navigates medical, social, and personal labyrinths. When the results of Tophs’s genetic testing emerge, Taylor learns an alarming discovery regarding her own health: she carries the BRCA gene mutation.
There is a word used for people in my position: previvor. You are no longer naïve, unaware of your genetic history; neither are you waiting in the strange middle space, wondering if you should act before cancer has a chance to act upon you. My body doesn’t feel like mine, my mind even less so, and with drains hanging at my sides from the incision sites, it’s hard to image I’ve escaped or preempted anything. Yet I have crossed over, to another space, where I’m far from healed but free from the looming question, the “What should I do?” that I held on to for four years. That is not nothing.
LBBC's Digital Content Producer, Adriana Lecuona, asked Taylor to talk about her experiences as a previvor of breast cancer.
What process did genetic testing play in your personal healthcare?
My BRCA2 mutation was a secondary finding, meaning, we found it when we were actually looking for something else. So I came into this life-changing knowledge in what felt like reverse order. We had agreed to have over 20,000 of Tophs’s genes studied, and, sure, I signed the paper that explained secondary findings, but I didn’t spend much time worrying about those results in the moment. I focused on my son. As the story goes, we didn’t find answers for my son’s various symptoms, but we found out about the BRCA mutation, and I couldn’t simply ignore it. It seemed like much more than a coincidence.
How did your decision affect the other members of your family?
I told my siblings, who told my parents. I found out that my mom carries the mutation. Thankfully, my sisters aren’t BRCA positive, so they don’t have to worry about high-risk appointments. My children who haven’t been tested will eventually have to decide (as adults) if they want to seek testing and counseling.
Genetic testing seems to promise answers and certainty, but it also opens up its own kind of uncertainty. Do you agree?
Yes, I came to genetics with this notion that the answers would be black and white, yes or no. My son would either have a mutation that pointed to a diagnosis, or not. I’ve learned so much since then about variants of unknown significance and how geneticists are brilliant human beings who still only have some of the answers. I’m the kind of person who wants to know. In general, I just like knowledge, even when I don’t know what to do with it. I want to understand as much as I can about what a certain mutation might mean, and genetic counselors have been great at helping me do that. But I’ve had to let go of the belief that genetics can tell me everything I need to know about my or my son’s genes.
What is the role of your spiritual faith in your healthcare decisions?
I’m of the belief that God and science aren’t at odds. So I prayed about my decision to have a mastectomy, especially because it wasn’t an easy decision. Having a BRCA mutation doesn’t mean you’ll definitely get cancer, and I didn’t want to chart my course based only on statistics, though I certainly considered those, as well. I needed to know that I’d have peace about the surgery, even on tough days. And when I had a scary few hours in recovery, I relied on the prayers of friends as well as the quick-thinking medical staff.
Having undergone a double mastectomy, to coin a term you used in your book, you didn’t allow your body to “betray” you with cancer. Has your relationship with your body changed now?
I wrote about moving between gratitude and grief for the New York Times. And that’s still where I am. I’m so grateful for the chance to get out ahead of a possible diagnosis. But I’m aware that the surgery changed my body and some of my thoughts about my body. That’s real, and I think there’s room for both grief and relief in this process.
Have you sought out a previvor community?
As soon as I found out about the BRCA2 mutation, I called my childhood friend, Lindsay Avner. She started Bright Pink, an organization that focused on the care and education of women at high-risk for developing certain cancers. She connected me to a woman who was a few years ahead of me in her journey, and I was able to just talk about my feelings and ask questions without any judgment.
What struck me most about This Boy We Made was the abundance of love between you and your husband Paul. As a reader, I felt its depth, its sincerity, and its lightness. How have the mastectomy and reconstruction surgeries impacted your relationship?
Honestly, I think one of my favorite but scariest memories is after my surgery, when my blood pressure was low and my heart rate too high, and Paul walked in. I needed him there. He played some soft gospel music on my phone and held my hand, and that night he slept upright in a hard chair and a mask in my recovery room.
We try to be a family that is open about mental health and counseling. Not only do Paul and I talk about budgeting for mental health care, but we tell our kids about our experiences, including how therapy and medication can be helpful. I never want them to feel like they’ve somehow lost or failed by going to therapy. I’d love for it to be similar to getting fresh air or joining a gym or meeting up with friends—just another aspect of life they might prioritize to stay healthy.
Have you spoken with your children about your mastectomy or the BRCA gene mutation?
I haven’t yet. I want them to have more time with their bodies first, especially because they can’t be tested until they're adults.
Mother guilt is such an important part of This Boy We Made. Based upon your mom’s experience and your own, what advice would you offer mothers of children who inherit the BRCA gene mutation?
I know my own mother felt guilty like she had given me the mutation. Okay, in plain language, I got it from her, yes. But she got it from one of her parents. We all inherit and pass down genes that we don’t get to mold and shape or rearrange. I’m so thankful for my family, and so much of who I am as an artist can be traced up that family tree and connected to various branches. This is the way of life, right? We don’t always get to choose. Not all the things. And that’s horribly frightening and also life’s original pre-existing condition. But we do have some choices, and I’m thankful I could make some decisions about my healthcare.
You’ve had to advocate for your son’s healthcare and education, as well as your own healthcare, navigating extremely diverse environments to achieve the best results possible. In your book, you show how much insight, perseverance, and support is needed to achieve those results. What advice would you give anyone, but, in particular, a Black person, when they have to navigate healthcare for themselves or their children?
Always have someone with you. That’s coming from me, a person who is sometimes so overwhelmed by big personalities or loads of information, that I might lose my voice for a moment. So unless it’s an emergency, I need to have my husband or a friend or an advocate or maybe even a stranger posing as a friend before I head into a meeting that could be difficult. If you are alone, remember you can almost always say, “I need a moment.” Or “I need to sleep on it.” Very rarely do you have to make a decision right there in the moment. Take a second to gather yourself and remember who you are before you step foot back into a world that might not feel as familiar to you.
Taylor Harris’s book, This Boy We Made, will be released in paperback on January 17, 2023, and can be purchased here.
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