4 minute read
ESSAY: My Journey to Understanding (and beating) the BRCA2 Gene
On a random weeknight in February 2014, I found a lump.
I was taking a shower before bed and—while I was not very keen on my monthly self-exams at that point—I felt something that wasn’t there before. A small, pinkish bump about the size of a pencil eraser had appeared almost overnight. I dropped my loofa and broke down in tears.
I’m only 20! I can’t have cancer. What if it’s in my genes? Mom had cancer pop up out of nowhere. She was 43 though…It can’t be cancer…Could it be cancer?
The lump turned out to a benign cyst that subsided over time, but that didn’t put an end to my worrying. My mom was diagnosed with Stage 3C Triple Negative Breast Cancer at 43, and we were all so shocked. I remember the day she sat me down—the day after my 16th birthday— and she told me the news. She didn’t yet know the details of how advanced her cancer had become.
What if it’s in my genes? When will it strike? At 23, I received the results of my BRCA2 mutation. The genetic counselor and my doctor scheduled a surgery consult for a mastectomy. As a full-time graduate student, I couldn’t bring myself to consider this option. However, the more tests I had and the more I learned about my family health history and the risks of my BRCA mutation, I understood my risk of cancer would gradually increase as each year passed. Statistically, I had a 90% chance of being diagnosed with breast cancer by age 70.
So, What is BRCA?
Pronounced “bra-kuh,” in most medical realms and support groups, BRCA stands for BReast CAncer susceptibility gene. We all have BRCA1 and BRCA2 genes; they are sort of like protectors against various types of cancer. But, when one gene is considered “mutated” (or in my case “deleterious”), the risk for cancer is higher than that of the general population. I am BRCA2+ (positive for a BRCA2 mutation) and have been diagnosed with Hereditary Breast and Ovarian Cancer syndrome—or HBOC. I’m sure my medical and science friends could better explain the details about BRCA1 and BRCA2, but I urge you to look over the ® Facing Our Risk of Cancer Empowered website to learn more.
With each test, appointment and imaging IV, my anxiety and worry of “when will it happen to me?” grew. I found strength in reflecting on my mom’s diagnosis and her amazing fight, but it also brought great concern that one day it would sneak up on me like it did with her.
The Clearest Option
As I turned 26, life became less intense. I was nearing a major career milestone, and I felt immense support from those around me. The idea of surgery and permanently altering my body was still extremely terrifying, but it was no longer unfathomable. Cancer has taken several loved ones from me, but I made the decision to not let it take me away from those I love. On November 3, 2020, I electively chose to undergo a Prophylactic Bilateral Mastectomy, the preventive surgical removal of both healthy breasts prior to a cancer diagnosis, to drastically reduce the risk of a future cancer diagnosis. Coincidentally, 11 years to the day after my mom’s lumpectomy, my risk of breast cancer was reduced from 90 percent to 3 percent. Perhaps even greater, it removed the constant fear from my life.
A New Normal
I was an essential worker through the entirety of the pandemic. As awful as it was, I think it helped me solidify and make peace with my decision in several different ways. In the year leading up to my surgery, I spoke to several women who had gone through this process and gained the confidence to verbalize my preferences for reconstruction.
Emily with her mother who passed away from breast cancer.
This “new normal”—where our window of tolerance for stress and response is extremely thin—helped me establish a better sense of boundaries. We’ve all had to take a look at our own needs a bit more closely and put in more of an effort to keep our emotions balanced.
This is the year I don’t have to worry about breast cancer, I thought on New Year's Day. I’d spent the last 12 years since my mom was diagnosed wondering how much time I had until it caught up to me. It was crazy to think of that feeling as part of my past. Though I’ve been in and out of therapy since my mom died, I returned earlier this year to process and manage the anxieties that come with big medical needs. I’ve also done a lot of reflecting on who “my people” are and turning my attention away from fixing broken relationships to focus on fostering and nurturing the good relationships. I found—probably for the first time in my adult life—I can do more for myself than I give myself credit.
By Emily Lind, Beta Eta–Southern Illinois University Carbondale. Emily is a Licensed Clinical Social Worker. Southern Illinois University Carbondale recently named her Advisor of the Year for her outstanding work as Chapter Advisor of the Beta Eta Chapter. Learn more about Emily's treatment, recovery and the genetic factors that led her to this decision her on her blog ®Positively BRCA2.
