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When she was a teenager, Amy Dysart's world turned upside down. Her mother, Gail, 38, was diagnosed with breast cancer. For a few years, treatment kept it under control. "When she had a recurrence of her aggressive cancer at age 42, my mom was treated by the best doctors at Fox Chase Cancer Center, but unfortunately she passed away." It was 1988 and Amy was only 20 years old. She also lost her maternal grandmother, great grandmother and three great aunts to breast cancer.
A few years later, in 1991, Fox Chase medical oncologist Mary Daly, MD, PhD, founded of the Risk Assessment Program and invited Amy to participate. "It was a no-brainer," Amy said.
"Breast cancer was very prevalent in my family and I wanted to do whatever I could to reduce my chances of developing the disease."
In 1998, when Amy was 30, researchers were learning about the BRCA gene mutation and its role in predicting the likelihood of developing breast cancer. At Dr. Daly's suggestion, Amy agreed to genetic counseling and testing at Fox Chase to find out if she carried the BRCA mutation. Surprisingly, she tested negative. Her mother's tumor tissue was also tested for the mutation and again, it was negative. Amy was confused and wanted an explanation for the large number of women in her family affected by breast cancer.
Amy continued to pursue her career, which landed her back at Fox Chase. She spent time working in both Institutional Advancement (fundraising) and special events for the hospital. "Fox Chase was wonderful to my mom. I felt at home when I worked there and was thrilled to 'give back' in my own little way." In 2000, Amy and her husband, Ken, started a family and she decided to stay home to raise her daughter, Gillian, who was named in memory of her mother.
Through more advanced genetic testing, Amy was hoping for answers.
All the while, Amy continued being followed by Dr. Daly and her team in the Risk Assessment Program. "I was used to the routine: mammography, MRI, clinic and follow up every six months." By 2007, research had progressed and a more comprehensive BRCA testing was available. "I decided to get tested once more using the more comprehensive test, but once again, my test was negative for a mutation. I was both shocked and discouraged. I wanted answers," shared Amy.
Amy's contacts at Fox Chase introduced her to an organization called Facing Our Risk of Cancer Empowered (FORCE), dedicated to helping those at high risk for breast and ovarian cancer. "I finally started meeting other women in the same boat as me with incredibly strong family histories of breast cancer, some of whom also tested negative for the BRCA mutation." Today, Amy serves as one of the outreach coordinators for the Philadelphia chapter of FORCE.
"Genetic research is so important."
"Through genetic testing and counseling, I learned that although I did not carry any of the particular BRCA gene mutations doctors can test for, there was probably another, unidentified gene mutation that runs in our family. To this day, doctors can't explain it. That is why genetic research is so important."
Turning 38 was a very emotional birthday for Amy. She was now the age her mother was when she was first diagnosed. "At that point, I knew I was finished having children and started considering prophylactic mastectomy and reconstruction." Amy struggled with this decision for the next four years. When she hit 42, the age her mom was when she died, Amy made the decision. In January 2010, Amy underwent prophylactic surgery to remove her breasts. "I am finally free of worry that I will get breast cancer one day. I am relieved. I will be able to see my kids grow up." Amy couldn't be happier with her choice.
"I adore the people at Fox Chase; they're like extended family."
In 2011, at 43, Amy, and her husband enjoy raising their children: two daughters, ages 11 and 5, and a son, age 9. She is concerned for their future and continues to be an active participant in the Risk Assessment Program. "I follow up each year and hope to help other women who are in my situation. I adore the people at Fox Chase; they're like extended family."