A few drops of blood, a simple genetic test and a phone call—that was all it took for Jessica Ginn’s life to change forever.
In March 2014, genetic testing revealed that Jessica, a 23-year-old aspiring nurse practitioner from Nashville, Tenn., was a carrier of BRCA1, the so-called “breast cancer gene.” While most of her peers were worrying about starting their careers and finding love, Jessica found herself staring cancer in the face.
The odds, she knew, weren’t good: Those with BRCA abnormalities have an almost 90 percent increased risk of developing breast cancer, along with a less grim (but still discouraging) 40 percent increased risk of ovarian cancer. One small, seemingly minute mutation in a genome sequence almost guaranteed that cancer was in the cards.
“It was tough news to swallow, but it wasn’t necessarily a surprise,” Jess said. “After about a day, though, I started thinking how lucky I am that breast cancer research has come so far, because it probably saved my life.”
Upon receiving her test results, Jess immediately came up with a plan of attack, opting to undergo a prophylactic double mastectomy as a preemptive strike against breast cancer. She knew it would be grueling procedure, but she was wholly prepared to dive in headfirst.
“I didn’t want to live with the possibility of cancer always looming over my head,” Jess explains. “I knew that if I got breast cancer, I would have to get a mastectomy anyway. So I was just ‘getting it over with,’ in a way. It’s empowering to know that it was my choice to get a mastectomy, that I could do it when I wanted to do it, rather than letting it happen to me.”
Jess’s mother, Kelly Ginn, was diagnosed with breast cancer in 2007 and battled the disease for a year. Jess witnessed firsthand the ravages of chemotherapy, the crippling weakness, the psychological and emotional toll of living with an illness. Although Kelly ultimately survived, the experience would leave an indelible mark on Jess—and a desire to avoid a similar fate at all costs.
“I saw my mom go through chemo, and I saw all of the little ways that it affects a person. I didn’t want to have to deal with that down that road,” Jess says.
The subject of BRCA1 and 2 genes has gained greater awareness in the past few years, propelled by Angelina Jolie’s influential public announcement in May 2013 of her decision to undergo a preventive double mastectomy after genetic testing revealed that she possessed the faulty BRCA1 gene. However, much is still misunderstood about the genetic breast cancer link. Although the prevailing myth is that breast cancer genes are transmitted solely through the mother, the father can pass down BRCA1 and 2 genes, too. So if either parent possesses a BRCA1 or 2 mutation, that parent has a fifty-fifty chance of passing it on to their offspring.
“There is a misconception that the maternal family history is more significant than the paternal family history with regards to mutations linked with breast cancer,” says Hilary B. Weiss, RNC, MSN, WHNP-BC, of Saint Thomas Breast Surgical Specialists. “This is not true. It is important to take into account both one’s maternal and paternal family history when determining if genetic testing is appropriate.”
Given her history of breast cancer, Kelly Ginn had undergone BRCA genetic testing back in 2007 as a safety precaution but had tested negative. So initially, the Ginn family thought they were off the hook—until they learned about the potential for males to carry the breast cancer mutations.
“After my dad, Dwight, learned that there was a potential for males to be BRCA1 and 2 carriers, he knew he needed to be tested,” Jess explains. “He knew he was at risk.”
Indeed, Dwight’s family tree is riddled with stories of breast cancer. Three of his aunts succumbed to the disease in their thirties, and another aunt caught her cancer early enough and underwent a double mastectomy. Cancer reared its ugly head again in 2006, when Dwight’s dad, Jess’s grandfather, was diagnosed with prostate cancer, a cancer that is linked to BRCA gene mutations in males. Given this ominous family history, Dwight knew he had a good chance of being a BRCA1/2 carrier.
After his primary care physician was reluctant to test him, Dwight took matters into his own hands and visited a family friend doctor, who agreed to administer the genetic test.
Jess explains: “It’s a $4000 test, and we thought that insurance wouldn’t pay for a man to get the test. He tested positive, and insurance did cover it, which was lucky.”
Dwight’s test results meant that there was a 50/50 chance his three children were carriers of BRCA1. Armed with this knowledge, Jess, along with her brother and sister (Zachary, 20, and Courtney, 26), underwent genetic testing in spring 2014. Amazingly, all three tested positive for BRCA1, indicating that they each had a higher cancer risk.
Not wasting much time, Jess underwent her double mastectomy in August 2014, just two months after her sister, Courtney, had her procedure. “It was a good time for it. I had just graduated from grad school and had a little break in my time,” Jess says. “It was empowering to know that it was my choice to do it—that I could do it on my terms, when I wanted to.”
Jess admits that she was “fearful” going into surgery, but she says that it helped seeing her older sister go through the same experience just weeks before. Thankfully, everything went smoothly, and Jess was discharged from the hospital after three days. “The benefit of being so young and healthy is that my recovery process was much easier,” she says.
She’s still in some pain, but Jess is overwhelmingly grateful for the support of friends and family. “I couldn’t have done it without them. It’s made the whole process much easier,” she notes.
As she gears up to undergo her reconstructive surgery in two weeks, Jess, who just became a board-certified nurse practitioner, is excited to put the whole medical ordeal behind her and move forward. “I’m ready to have boobs again!” she says with a laugh.
Because she is still at risk of ovarian cancer, Jess will have to endure ongoing medical surveillance, including biyearly transvaginal ultrasounds to monitor her ovaries. Furthermore, she will likely need to have her ovaries removed at age 35. But Jess remains positive about the future, bolstered by the knowledge that she’s kicked cancer in the butt.
“People say, ‘Oh, you’re so brave for doing this,’” Jess says. “But I don’t think I’m brave. I think I made a wise decision. I made a decision instead of letting it happen to me. Because I was playing the odds, and I knew that the odds weren’t in my favor.”
Jess’s advice to fellow young women in their 20s? Know your family history—and be a champion of your own healthcare. “If you think you should be screened for BRCA1 or 2, talk to your doctor about it,” she says. “If you think you need to be screened but your doctor doesn’t think you should be screened, then, well, you need to be proactive about it and go see someone who trusts what you think. It’s your body, your health—it’s nothing to mess around with.”