Brandi Preston remembers her mother gathering her children by her bedside three days before she died from breast cancer.
"She had the 'big talk' with all three of us kids," Preston said. "I was 14. I was the oldest. She told me, 'Remember the name Twilla Westercamp.' She had me spell it out. 'T-w-i-l-l-a…'"
Preston's mother met Twilla Westercamp at the Alegent Creighton Health Cancer Genetic Program when she was diagnosed at age 35 with advanced breast cancer. She died at the age of 40. Genetic testing is designed to find individuals who have hereditary cancer, which occurs when an altered gene is passed down in the family from parent to child. Those with hereditary cancer are more likely to have relatives with the same type or a related type of cancer. Their cancer often occurs at an earlier-than-average age and they may develop more than one cancer.
Tests showed the young mother had hereditary cancer and was positive for a gene mutation. Her own children—Brandi, her brother and her sister--were at risk.
"Before she died, my mom told me to see Twilla (Westercamp) for genetic testing," Preston said. "She told me, 'I didn't really have a choice what happened to me but I want you to know. Don't bury your head in the sand!'"
Now a certified genetic nurse in the Alegent Creighton Health Cancer Genetic Program, Westercamp said the vast majority of hereditary breast and ovarian cancer is due to an alteration or gene mutation in either the BRCA1 or BRCA2 genes, which can be inherited from either a mother or a father. For those who have a gene mutation, their parents, children and brothers and sisters have a 50 percent chance of having the same gene mutation. Not only that, the cancer risk for a person with the BRCA gene mutation is up to 44 percent for ovarian cancer and up to 87 percent for breast cancer.
Preston wanted to know if she had the gene mutation. Under Nebraska state law, a person has to be 19 for genetic testing. Not only did she have to wait impatiently for five years to fulfill her mother's wish, she also couldn't find Westercamp when the nurse moved to another hospital. And Westercamp, who had promised the mother she'd take care of Brandi, lost track of the teen. Both women were frantic.
Westercamp remembered a smiling co-worker approaching her one day. "She told me someone was coming in who was going to delight me all the way down to my heart." Preston had tracked her down and was undergoing genetic testing. It was Preston's 19th birthday.
"It helped me fulfill my promise to my mom," she remembered. "I saw her go through this horrible, horrible disease and I didn't want to go through that. My mother didn't want me to go through that."
Her results came back. Preston was positive for the gene.
According to the National Cancer Institute, one in up to 1,400 women is a carrier of the BRCA1 and BRCA2 gene mutations, resulting in up to 10 percent of all breast cancer cases.
"I pretty much knew ahead of time," Preston said. She had the same gene mutation--BRCA1—that would lead actress Angelina Jolie to have a preventive bilateral (double) mastectomy a few years later.
The downside of knowing she has the gene mutation is feeling like she's "somewhere between healthy and living with cancer," Preston said. She's more at risk for breast, ovarian and pancreatic cancer as well as melanoma.
But the "plus" side of knowing is the peace of mind that comes with it. "I know if I have cancer, they'll find it early," she said.
Westercamp said when she sees a patient like Preston, she conducts a family study. "I become a detective," she said. "I want them to have as much information as they can." She said public attention to the BRCA1 mutation increased when Angelina Jolie announced she had the gene and followed with a bilateral mastectomy. "But I don't want people to think that's the only choice." Westercamp said. She called "active surveillance" critical.
"There's so much more you can do when you know," Preston agreed. "Because I'm not fighting cancer I have so many more options than my mother did. Her options were limited." She has a number of preventive screenings: a physical and clinical breast exam every six months, an MRI once a year and an ovarian screening every two years. She does breast self-exams "more than once a month" and sees a dermatologist to be checked for melanoma.
She's also active in Bright Pink, a national nonprofit organization with a chapter in Omaha that focuses on prevention and early detection of breast and ovarian cancer in young women, while supporting those who are high risk. "There are seven or eight of us in Bright Pink who actually have the BRCA gene mutation," she said.
Seven months ago, Preston gave birth to a baby boy—Peyton—who she wants to be tested when he's old enough. "It's hard knowing I could be passing on the gene to him." Like Angelina Jolie, she's having a bilateral mastectomy soon because it will significantly reduce her risk of breast cancer. She won't be able to breastfeed if she has another child, but she feels strongly it's the right decision for her, especially when she remembers what her mother went through. "I feel like she gave me a lot of strength. When I start to doubt what I'm doing, I hear this little voice saying, "No! No! No! No!' My mother definitely has intervened."
Who Should Consider Genetic Education Testing?
Not all cancers are inherited. Almost 90 percent of cancers are attributed to environmental factors, lifestyle choices or a combination of reasons. You should think about genetic education and counseling if your family history includes:
- Multiple cases of cancer, especially breast, colon, ovarian, melanoma and pancreatic
- Cancer in certain paired organs, including breast/ovary, colon/endometrial or melanoma/pancreatic
- Cancer at a very early age
- A known genetic abnormality