Women with a family history of breast cancer are undergoing double mastectomies to fight the disease.
Tania Nilles is a busy Wauwatosa mom. She has a husband, Chris, two boys ages 8 and 4, and a part-time job as a nurse at an orthopedic hospital in Franklin. She is helping her mother through chemo treatments for metastatic cancer.
Nilles has friendly brown eyes and chestnut-colored hair cut in a stylish bob. She enjoys reading and photography. “I love taking photos of my family, and have done a few shoots for friends and family.” Together, the family enjoys geocaching, trail walking and making visits to farmers markets.
Nilles also has an inherited mutation of the BRCA (pronounced BRACK-uh) gene. This puts her at a much higher risk for developing breast and ovarian cancer than the general population.
In 1990, geneticist Mary-Claire King, then at the University of California-Berkeley, published a paper announcing the discovery of the gene mutation. But it was the actress and filmmaker Angelina Jolie who put awareness of it on the map, at least for the public. Her frank and widely publicized revelations that she had a bilateral (both breasts) mastectomy (in 2013) and a bilateral salpingo-oophorectomy (removal of ovaries and fallopian tubes, in 2015) brought the issue to the forefront of public consciousness.
Typically, if a physician learns that a patient has a strong family history of cancer, she will suggest genetic counseling. In Nilles’ case, when her mother, Cindy Bartlett, developed breast cancer in 2005, and then metastatic cancer in late 2010, a friend whose niece is a genetic counselor suggested Cindy be tested for the gene mutation. She tested positive for BRCA2, so Tania also contacted the genetic counselor, Jenny Geurts at Froedtert & the Medical College of Wisconsin.
“Jenny said, ‘Come in when you’re ready, and we’ll talk,’” says Nilles, now 37. “‘If you decide to get tested, you’ll have to decide what to do with the information.’ I never felt pressured or rushed.”
Geurts’ first job is to do a risk assessment by taking a detailed family history, then decide whether the patient has enough risk factors to be eligible for genetic testing that will be covered by insurance. If the patient tests positive, it’s time to explore options.
When Geurts learned of all of the cancer in Nilles’ family – her mother, a grandfather who died of pancreatic cancer, a cousin with breast cancer, and a great-grandmother who died of some sort of cancer in the 1950s – red flags went up. Nilles was definitely eligible for testing.
“People asked why I would want to get tested,” Nilles says. “They said it’s easier to be oblivious than to have the knowledge that you have the mutation.“But I’m very Type A,” she continues. “I couldn’t not know.”
So just before Thanksgiving 2011, Nilles gave a saliva sample, and a few days later, the results came back: positive for the BRCA2 gene mutation. Her chances of developing breast and ovarian cancer were much higher than for most women.
The initial diagnosis was overwhelming. Her older son was only 4, her baby 9 months. “I now knew a little too much,” she recalls. “And I now had to decide what to do with the information.”