Elizabeth (Liz) Reeves knew well from a young age the impact that breast and ovarian cancer could have on a family. Her mother had been diagnosed with breast cancer in her mid-thirties, and she passed away at age 39, when Liz was seven. Her maternal grandmother had died from ovarian cancer; her maternal aunt was diagnosed with breast cancer at age 40.
When she was in her mid-twenties, Liz’s OB/GYN suggested that, given her family history, she consider undergoing genetic testing to see if she carried the genetic mutations in her BRCA1 and BRCA2 genes that would increase her risk of breast and ovarian cancer. At the time, Liz’s insurance provider would not cover the cost of the testing, and this, together with a concern about the potential impact of a positive result on her health coverage, resulted in her decision to put off testing.
At age 35, after her aunt was diagnosed with cancer for a second time and a first cousin was also diagnosed (both testing positive for the BRCA2 genetic mutation), and aware of the passage of the Genetic Information Nondiscrimination Act, Liz made the decision to move forward with genetic testing.
In January 2010, she met with genetic counselor Nicola Stewart through the Cancer Risk Program at UCSF Medical Center. Liz brought several family members along, recognizing their shared risk and hoping the information could benefit others who, like herself, had not yet been tested. “My maternal cousin, my sister (neither of whom had yet been diagnosed or tested), and my maternal aunt all joined me for the counseling appointment,” Liz says. “I had a few questions, but I was well-informed enough to know that I would be testing. The counseling appointment felt more important for my cousin and sister who were not as informed. I really wanted to share this experience with them and just confirm my understanding to ensure that I was making a well-informed decision to test.” Following the counseling session, Liz underwent testing that same day, as did her cousin, while her sister chose to wait and spend more time thinking about the decision.
The counseling was invaluable, Liz says, as Nicola was able to share information and guide the family in their understanding of the process and its implications, and also facilitate their discussion of the issues involved. “Nicola was truly wonderful in her ability to not only listen to everyone, but hear what each of us were saying, often sensing when one of us needed to be heard or needed to be engaged,” Liz says. The counseling helped the family not only make personal decisions about genetic testing but also to share the information with others in their family. “We were all able to all speak to the remaining family members to convey the importance of testing and to help them make informed decisions,” Liz says.
Many of Liz’s family have now undergone genetic testing, though her sister opted not to be tested. The ability to respect one another’s differing views on the decision was another gift of the counseling session. “We learned that it's a very personal decision,” Liz says. “It was hard for me to understand why someone wouldn't want to know their status, until Nicola helped and encouraged my sister to share her reasons. At the end of our counseling appointment, I totally understood. I didn't necessarily agree, but I totally understood my sister's decision.”
In the wake of her own positive result, which confirmed that she was at increased risk for breast and ovarian cancer, Liz decided to undergo a prophylactic double mastectomy, followed by reconstruction. Five months after her mastectomy, she was blessed with an unexpected pregnancy and gave birth to her daughter in 2011. Though Liz had struggled with whether or not to have children, given the potential for their increased risk for cancer, she feels empowered by her own experience with genetic counseling and testing and knows her daughter will have the guidance she needs to manage her own risk when she’s ready. “Her father and I decided to hold off on testing our daughter, so that she could have the gift of making her own decision about her health when the time is right. We will solicit the help of a genetic counselor for her at that time.”
Reflecting on her decision to undergo counseling and testing and all that has followed, Liz is grateful for the guidance she received and for the outcome of her choices. “I'm so pleased with my decision to test and with the decision to move forward with surgery,” she says. “It was the best decision I could have made for myself. I realize that it’s not the only decision, but it was the right one for me.”