When Brandi Preston was 14, her mother, Kamie, made her and her two siblings make a promise.
"Three days before she died, she made each one of us promise that we would be tested and know our risk and be proactive rather than reactive," she said.
Kamie Preston died in 2005 at age 40 after a five-year battle with breast cancer. Brandi said her mother was found to have a BRCA-1 gene mutation, which can be hereditary and significantly increases the lifetime risk of developing breast and other types of cancers for women and men.
Brandi, a former Fort Calhoun resident and student, said her mother only found out she had the gene mutation after being diagnosed with breast cancer. So, for the past several years, Brandi has lived by the proactive promise she made to her mother while helping others do the same through the Kamie K. Preston Hereditary Cancer Foundation in Omaha.
"On my 19th birthday, I had testing done because that is the age of consent," Brandi said. "I was found to be BRCA positive … I immediately began putting together my team of doctors."
Every six months following the positive test, Brandi said she would meet with her doctor for screenings. She said women who are BRCA-1 positive carry an 87 percent lifetime risk of getting breast cancer.
"At that time, I looked at that 87 percent risk as not if, but when," she said. "If you had an 87 percent chance of your airplane falling out of the sky, you probably wouldn't get on it … That's just kind of the way I did it."
Though all of her screenings were clear for signs of cancer, Brandi said she didn't want to continue to wait for "when." At 21, Brandi became pregnant with her son. He was born March 6, three days after her mom's birth and four days before her own. That's when Brandi realized there was more than just herself to think about.
"I went in and did my breast MRI. My doctor called and she said, 'Everything looks good, I'll see you in six months," she said. "I had my son in the backseat, and we were driving on 680. I hung up the phone, and I heard my baby cooing in the backseat and I was like, 'I am literally waiting for her to call and tell me I have cancer.'"
Brandi said she called her doctor back to talk about surgery options. At the age of 22, she had a bilateral preventative mastectomy, which took her 87 percent lifetime risk down to less than 2 percent.
"I had a 10 month old baby at the time, which was really hard, but I had a lot of support from friends and family, that was really great," Brandi said. "If I didn't talk about my surgery and talk about genetics all the time, I honestly would forget most days that I had it done. I would do the whole thing again tomorrow."
In 2015, about a year after her surgery, Brandi started the Kamie K. Preston Hereditary Cancer Foundation to help women and men pay for genetic testing. She said when her mom was tested nearly two decades ago, it cost $6,000 out of pocket, and it can now range from hundreds to thousands of dollars.
"I know a lot of people if they were faced with a test that would cost them $6,000 they would probably turn it down," Brandi said. "But that $6,000 dollar investment definitely saved my life and my brother's life and the lives of future generations, potentially."
She said the foundation pays for the cost of many types of genetic testing for anyone who meets national testing guidelines, which include such criteria as family and personal history.
"Insurance coverage has improved a lot over the years, but we still see that women are covered under the Affordable Care Act if they meet the national guidelines if they're on private insurance," Brandi said. "But men who have that same family history are subject to their deductible first, and men and women can carry these genes the same."
Brandi said a lot of people see the foundation as a breast cancer organization. They see pink, she said, and think of women, but a lot of funding goes to men's testing. She said there's many organizations who reach out to women about their risk for cancer, but not as much for men.
"Who's talking to my brother about his cancer risk?" she said. "We know men can get breast cancer, and he might be thinking that because our mom had breast cancer, but he would have never known about his risk of prostate cancer or melanoma, and now he knows he needs to be aware of those things."
Brandi said the foundation will order any test a provider will order. She said Myriad Genetics, a company which offers lab testing, has a federally-approved testing panel for 35 genes linked with eight different types of cancers: breast, ovarian, prostate, pancreatic, gastric, colon, uterine and melanoma.
In addition to the 87 percent lifetime risk of breast cancer, Brandi said women with the BRCA mutation have a 63 percent lifetime risk of developing ovarian cancer and an elevated risk for pancreatic cancer and melanoma. She said men with the BRCA mutation have an increased risk of breast cancer and a 20 percent lifetime risk of prostate cancer.
The risks are why Brandi wants people to be proactive rather than reactive. The risks are why she started the foundation that carries her mother's name.
"I just wondered how many other families out there were like mine, and how many other 14-year-old girls would have to lose their moms? Or how many 35-year-olds would have to be diagnosed with cancer? Or how many 40-year-olds would sit at a bedside and tell their children that they're expected to go to college or they're expected to take care of their grandparents?" she said. "I didn't want any young moms to have to tell their child goodbye, or any child to have to tell their mother goodbye when really, these cancers, many of them can be prevented or the risk dramatically decreased."