Breast Cancer “Previvor”
- Tested positive for a BRCA1 gene mutation in 2012
- Visited with genetic counselors at Seattle Cancer Care Alliance (SCCA)
- Completed prophylactic hysterectomy at UW Medical Center
- Completed prophylactic double mastectomy (outside SCCA system)
Eva Moon’s family-tree roots stretch all the way to Ukrainian soil. Her grandparents immigrated to the United States in the 1920s and ’30s, bringing with them strong family values, their Eastern European culture, and a mutation of the BRCA1 gene.
This little gene mutation is responsible for an increased risk of cancer and is more common among people from Eastern Europe. A woman's risk of developing breast cancer, ovarian cancer, or both is greatly increased if she inherits a BRCA1 or BRCA2 mutation. Men with these mutations are also at increased risk for breast cancer. The mutations can be passed down from either parent.
It is rare to have this mutation in the general population; about one in 400 to one in 800 people will have a BRCA1 or BRCA2 mutation in the U.S. However, among men and women of Ashkenazi (Eastern European) Jewish ancestry, the odds are more like one in 40.
The risk of breast cancer in a woman with a BRCA1 or BRCA2 mutation is between 60 and 80 percent, depending on which genetic mutation she has. This is compared to women who don’t have the mutation, whose risk of developing breast cancer by age 70 is about eight percent.
Inherited Risk for Cancer
Many people in Eva’s family have had cancer. Eva’s grandmother died of ovarian cancer, while her grandmother’s sister died of breast cancer. Eva’s uncle died of pancreatic cancer, while two other relatives died of gastric cancers. Another uncle survived prostate cancer. Eva’s mother had uterine cancer and 12 years later peritoneal cancer, which she died from in 2012. The oncologist caring for Eva’s mother at the time suggested genetic testing for her in 2011. It was then discovered that the BRCA1 gene mutation had followed Eva’s family from Eastern Europe.
Eva has two sisters; all three immediately had genetic testing, too. Eva was the only one who carried the mutation.
“My sisters and I had all talked while we waited for our test results about what we would do if we carried the mutation,” Eva said. “My little sister was positive she would have it. But her test was negative.”
Taking Action to Prevent Cancer
Eva’s doctor recommended that Eva visit Seattle Cancer Care Alliance’s Breast and Ovarian Cancer Prevention Program, which she did.
“The University of Washington is on the forefront of identifying many genes that put people at risk for cancer,” said Elizabeth M. Swisher, MD, medical director of the Breast and Ovarian Cancer Prevention Program. “The prevention clinic helps people deal with their results, and together we provide an individualized assessment and figure out what to do with the information.”
Three weeks after her visit to the Breast and Ovarian Cancer Prevention Program, Eva underwent a prophylactic hysterectomy by Dr. Swisher, who used the da Vinci robot to perform minimally invasive surgery.
“Current recommendations for women with a BRCA1 or BRCA2 mutation is to have her ovaries and fallopian tubes removed,” said Dr. Swisher. “Given Eva’s history, she chose to have a full hysterectomy as her risk for uterine cancer may have been high as well.”
Additionally, some women are opting for prophylactic mastectomies. Eva chose this route and on February 8, 2012, had a bilateral mastectomy.
Genetic Counseling Is Important
Before she knew she had the BRCA1 mutation, Eva was used to having mammograms, magnetic resonance imaging (MRI) scans, and biopsies. Her breasts were dense, and the radiologists would often find things—suspicious areas—“but the extended testing always proved that the ‘things’ were negative,” Eva said. “I’ve talked to so many BRCA people who have had the biopsies and mammograms, and cancer has gone undetected until they had surgery. A high percentage of these people share that story.”
Coming to the decision she did, to remove important parts of her body in hopes of avoiding cancer, did not come easily to Eva. Her husband, Michael Gordon, wanted to help and be supportive. “But it took a while for him to come on board,” Eva said. “He didn’t understand my feelings about losing my breasts. I would try to tell him about BRCA and the risks, but it was hard for me to not be emotional and it was hard for him to hear the facts because all he heard were my emotions.”
Genetic counseling was good for Eva and Michael. “I made him come to SCCA with me to meet with the genetic counselor and hear the facts,” she said.
Eva and Michael have two adult sons who also had genetic testing done. Thankfully, results for both men were negative. “This means that in my family, the gene has died out,” Eva said. “It ends with me. Both of my sons and both of my sisters are negative! It's just a coin flip—50/50 each time. I know some families where every single one inherited the gene. And here in mine, I was the only one.”
Healing Through Humor and Music
A graphic designer and web developer by trade, Eva has always used humor to deal with difficult things. She has also long been in a band; she plays piano and sings. She began writing her own music in 2000.
“When I learned about my BRCA mutation, I turned toward music and writing and slowed down on the graphic design,” she said. “I started writing limericks about BRCA and posted them on the FORCE website.” Facing Our Risk Cancer Empowerment (FORCE) is a non-profit organization devoted to improving the lives of people affected by hereditary breast and ovarian cancer.
Eventually, Eva wrote a line-up of songs, and her mentor encouraged her to write a show that became “The Mutant Diaries; Unzipping My Genes,” which Eva performs for live audiences and is now on DVD. Her first performance was for her family and her mother in hospice just a few days before her mother passed away. “That was the most meaningful performance of all,” Eva said.
“They call us ‘Previvors,’” Eva said about people who have had prophylactic surgery. “I never would have thought this (all the testing, counseling, worries, and surgeries) could be a positive thing. All the love of family and friends and how I can contribute has been worth any amount of suffering,” she said. “In the movies, the hero’s mutant superpowers aren’t revealed until something extraordinary happens. It’s like that in real life too. It’s only when you face your greatest challenge that you discover what amazing things you’re capable of.”<< PREVIOUS | NEXT >>