For decades, cancer has been the “elephant in the room” when Elizabeth Fedie has conversations with her extended family.
Fedie was 5 years old when her grandmother, 50, passed away following an ovarian cancer diagnosis. Later, the same cancer also claimed the life of her grandmother’s sister. Their deaths left holes in the fabric of her family.
“Every time my dad told a story about my grandmother, you could see in his face that the pain of losing her was still there,” Fedie said.
The experience also stuck with Fedie, who decided to study genetics at the University of Minnesota when she grew older. It was there that Fedie learned of the inherited BRCA1 and BRCA2 mutations, which greatly increase the risk of breast and ovarian cancer in women and can be passed down from either side of the family.
With her own family history at the forefront of her mind, Fedie received genetic testing in 2007. Her suspicions were confirmed: Fedie had the BRCA1 mutation. The discovery surprised Fedie, who expected despite her family history that she was just “being paranoid” about her cancer risk.
Fedie took the findings of the genetic test seriously. She met with Family Medicine Physician Carolyn Torkelson, MD, a women’s health specialist, and developed a plan for regular monitoring, which included early screening for breast cancer. She began receiving mammograms at six-month intervals.
Though she knew they were necessary, Fedie dreaded the regular screenings and painful false-positive procedures she would endure. She often worried about the potential results long before going in for each screening.
Statistically, 55-65 percent of women with the BRCA1 mutation will develop breast cancer by age 70, according to the National Cancer Institute. By comparison, only 12 percent of women in the general population will be diagnosed with breast cancer sometime during their lives. Given her family history, Fedie felt it was only a matter of time before she received her own bad news.
At 34, with her children growing older, Fedie decided the time was right for a bilateral—or “double”—mastectomy, followed by breast reconstruction surgery. Fedie, who is the research development manager at Masonic Cancer Center, University of Minnesota, met with Surgical Oncologist Todd Tuttle, MD, and Plastic Surgeon Umar Choudry, MD. She scheduled the mastectomy with Tuttle on July 10, 2017.
Immediately following the mastectomy, Choudry inserted expanders to stretch Fedie’s skin and tissue in preparation for breast reconstruction. Over the summer, Fedie went in for weekly check-ups—which included receiving regular saline injections into the expanders.
On Nov. 6, Choudry is scheduled to perform the reconstruction procedure.
"Our philosophy for breast reconstruction is to have the patient at the center of the decision making process,” Choudry said. “There are numerous options available, and depending on the patient's wishes, anatomy and clinical considerations, we plan the reconstruction as a team."
Preventive bilateral mastectomies are typically only recommended for those with the BRCA1 or BRCA2 mutations—or an “extremely strong” family history of breast cancer, Tuttle said.
The procedure itself is lengthy, Tuttle added, and patients typically need a month or more to recover. Including breast reconstruction, the entire process can take six months or more. The surgery markedly reduces the risk of breast cancer, but it does not entirely eliminate the possibility, he said.
Fedie is aware that a bilateral mastectomy and reconstruction comes with its own set of risks, including the possibility that her implants will need to be replaced in 10 or 15 years. But she stresses that her own research played an integral role in her decision—and that she believes the trade-off is well worth her peace of mind, given her increased cancer risk.
“For me, it was this or living with the fear that I might one day be told that I have breast cancer,” Fedie said.
Recently, one of Fedie’s aunts has also been diagnosed with breast cancer and tested positive for the BRCA1 mutation. Based on Fedie’s own awareness efforts, several of her family members have now undergone testing for the BRCA1 mutation.
Fedie attends Facing Our Risk of Cancer Empowered (FORCE), a support group for “pre-vivors”—those who have opted to take early action in the face of genetic cancer risk. She is currently considering possible preventive care plans to reduce her risk for ovarian cancer as well. Through it all, she counts on the steadfast support of her husband, Tim. Together, they are trying to plan for the best future possible.
“Seeing what my dad went through, losing his mom at age 25—I didn’t want that to happen to my boys,” said Fedie. “My grandmother’s death was awful for my family, but it also gave me a rare chance. Because of my family history, I was able to get tested and take action to avoid the same outcome.”