I Took a Gene Test. The Results Left Me Shocked—and Empowered

It began on an unremarkable evening in April 2010. I was preparing dinner for my family when I got the call.

The physician from the St. Louis Breast & Cancer Institute said, "Mrs. Keys, you have ductal carcinoma in situ (DCIS)."

As a licensed practical nurse, I knew what that meant.

Leading up to this, I had no symptoms, but my twin sister, Vanessa, and I had been advised to start getting mammograms 10 years earlier, at 27 years old, because of our mother's first diagnosis at such a young age. I never let a year go by without getting my mammogram.

Receiving that phone call kicked off the longest night of my then-37 years. I called it an "interruption of life." Little did I know the interruptions were only beginning.

Soon after that April call, I met with a care team to learn more about DCIS, or abnormal cells in the milk ducts of the breast—one of the earliest forms of breast cancer. The team recommended breast-conserving surgery, also called a lumpectomy, as well as genetic testing to equip us with as much information as possible.

In advance of the May surgery, I took Myriad Genetics' MyRisk Hereditary Cancer Test. In 2007, my mother was diagnosed with breast cancer for the second time, at 56 years old, 20 years after her first diagnosis.

While caring for her, I had a vivid dream that I would be the daughter who also would face this challenge, but that I would be okay.

After a successful surgery, I received the test results: I carried a BRCA2 gene mutation. The BRCA1 and BRCA2 genes on their own don't cause cancer—we all have them.

However, a BRCA mutation, like I have, increases the risk of developing breast, ovarian and other types of cancer.

The results left me shocked, but they also empowered me.

Beyond my own family history, as a Black woman, I knew I couldn't miss a single mammogram.

Breast cancer doesn't target all women equally. Black women have a higher chance of developing breast cancer before the age of 50 than white women, and Black women are more likely to die from breast cancer than any other race or ethnicity group.

Armed with the vital information from my genetic test, my surgical oncologist and I were able to think through the right prevention and treatment path. One option was to have a double mastectomy, removing all breast tissue from both of my breasts.

But, even with this gene, I couldn't imagine having my breasts removed.

We decided to proceed with a close observation approach, which included radiation, mammograms every six months, and a daily drug to be taken for five years to prevent the cancer from growing and spreading to the opposite breast.

The next few months would be quite a ride.

In June, I began radiation treatment. For two months, in the summer heat, I underwent treatment every weekday. I experienced a lot of side effects from the radiation, starting with an infection under my arm due to my deodorant.

I didn't know at the time that you shouldn't use scented deodorant while undergoing radiation, and now I make a point to warn others. To this day I can't smell that scent—a favorite that I had used for years—without wincing. It's amazing how cancer can affect even the smallest parts of your life.

As if an infection wasn't enough, I developed an outbreak of painful blisters on my forehead in October. It turned out to be shingles, brought on by a compromised immune system from the radiation.

A few months later, in March 2011, one large, irritated gallstone landed me in surgery once again for a gallbladder removal—the last thing on my mind while I was focused on trying to minimize my risk of cancer.

Somehow, the rollercoaster of 2011 was just getting started for me and my family.

My twin Vanessa underwent the same genetic testing in early 2011, and it revealed that she, too, was positive for the BRCA2 mutation.

Given this information and our family history, she decided to have preventive surgery—a hysterectomy to decrease her risk of developing breast cancer and eliminate her chance of developing ovarian cancer.

However, she wanted to keep her breasts, too, and decided against any additional surgeries.

I never wanted to welcome my sister into this "club," but I appreciated that we could support each other through such difficult decisions and experiences.

While still healing from my gallbladder removal, I scheduled my hysterectomy, but my plans changed drastically after receiving my latest mammogram. It showed that the breast cancer had returned—this time in the right breast. I had taken my medication without fail, every single day. I was devastated to learn it hadn't worked for me.

My care team advised me to discuss the mastectomy option with my surgeon. If I didn't take this step, thanks to the BRCA2 gene, I could be looking at a third cancer diagnosis.

I still didn't want to have my breasts removed, but I was out of alternatives. Staying alive was my priority. I had a double mastectomy with lymph node removal and tissue expanders, followed by a hysterectomy.

My experience didn't end there—I had several surgeries to reconstruct my breasts and nipples as well as a hospital stay after developing an infection.

In total, from 2010 to 2013, I underwent seven surgeries. The toll cancer took on my body was tremendous. I slept in a recliner for two and a half years because it was the only way I could get comfortable—I couldn't lie down on my stomach, and I had limited mobility in my arms.

Cancer came with many, many challenges, and it was an uphill battle not just for me, but for my husband, children, and family.

For the last 11 years, I have fueled both the triumph and the pain of my cancer experience to help others facing similar challenges.

Before I'd even finished my surgeries, I created Valeda's Hope, a 501c3 nonprofit that assists women in their journey from cancer diagnosis to remission.

Valeda's Hope donates recliners to women healing from breast cancer surgery, as well as care items such as soft button-down pajamas—so they don't need to lift their arms over their heads—slippers and adult coloring books.

I also founded a breast cancer awareness conference called, "My Strength Is Your Strength," which drew more than 120 attendees the first year.

We will celebrate the 11th anniversary this year in St. Louis, as we continue to raise awareness of breast cancer in the community, honor survivors and their caregivers, discuss the impact of genetic testing, and provide information on the latest treatments.

I encourage others to embrace the spirit of My Strength Is Your Strength: Talk about your family's health history. Get genetic testing. Stay on top of your regular screenings and exams. It just might save your life.

Valeda Keys is a two-time breast cancer survivor, author and founder and executive director of Valeda's Hope, a St. Louis-based breast cancer support organization providing resources to women in the community along their cancer journey. After taking a Myriad Genetics' MyRisk Hereditary Cancer Test, Valeda discovered that she had the BRCA gene mutation, increasing her risk of developing breast, ovarian and other types of cancer.

As a licensed practical nurse, Valeda's passion is assisting women in their breast cancer journey, raising awareness about breast cancer risk and the steps girls and women can do to promote breast health.

All views expressed in this article are the author's own.

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