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In the back of her mind, Caryn Engle was aware that cancer might be a potential threat to her health. The wife and mother from Lake County knew all too well about the disease on her father’s side of the family. Breast cancer took her grandmother at age 41 and her great-grandmother at just 36.
Pivotal Moment “I really didn’t think too much about cancer growing up,” said the 40-year-old Engle of Highland Park. But that changed five years ago. One of Engle’s friends—also age 35 at the time—broke the news that she had just been diagnosed with breast cancer. The two women share a similar health heritage.
Engle also listened to her affiliated OB/GYN Carol Ellman, MD. “Dr. Ellman, whom I love, didn’t pressure me,” recalled Engle, “but she did encourage me to consider genetic testing based on the significance of my family history.” Dr. Ellman’s gentle nudge proved to be a tipping point. Engle made an appointment with Peter Hulick, MD, Medical Director of The Mark R. Neaman Center for Personalized Medicine and moved forward with genetic testing.
Knowledge is Power “My husband and I met with Dr. Hulick and a genetic counselor and went through a detailed family history,” recalled Engle. “It was clear that I had a higher likelihood of developing breast cancer. They do a really good job of helping you understand the levels of risk.”
When the genetic test results came in, the news was no surprise, but still devastating. Engle carries a mutation of the BRCA1 gene, which is linked to a higher risk of developing breast and/or ovarian cancer. “Today, I think back to the test results as a gift of information and an opportunity to take care of myself,” she noted.
Engle, the mother of a now 9-year-old son, moved quickly to establish her proactive plan. She consulted with Dr. Hulick to weigh all of her options. Engle decided that she would take the most pre-emptive course of action: prophylactic or preventive surgeries to dramatically reduce her risk of the disease.
Surrounded by Experts “Nobody wants to be told they are at higher risk for developing a cancer, but over time having that information can be empowering,” explained Dr. Hulick. “For families with a significant history of a certain disease, it can be a relief to understand the ‘why’ behind that history and develop a plan for the future.” With her decision made, Engle met with a team of NorthShore Kellogg Cancer Center experts including: Surgical Oncologist David J. Winchester, MD, Plastic and s Reconstructive Surgeon and Gynecologic Oncologist Carolyn Kirchner, MD. All specialists and Dr. Hulick hold academic appointments at the University of Chicago Pritzker School of Medicine.
“Although the surgical procedures were a difficult experience, the care was excellent and everyone on the NorthShore team was very attentive and compassionate," said Engle, who calls herself a “previvor”—someone who has survived a predisposition to cancer but has not had the disease. Engle also is an enthusiastic advocate for other women and families who find themselves in her shoes.
Paying it Forward Engle helped form the new Myra Rubenstein Weis (MRW) Leadership Board through NorthShore Foundation. She co-chairs the group’s efforts to raise awareness and funds for genetic testing as well as for mammography screening for uninsured and underserved women. “I feel really grateful for the opportunities I’ve had, and the tremendous family support. Not everybody has those advantages,” added Engle.
“Caryn is a very positive force,” said Dr. Winchester. “She was her own advocate and is now a strong advocate for others. She’s in a great spot now because of her actions. Her breast and ovarian cancer risk is as close to zero as possible.”
“It’s very important for people to understand that genetics doesn’t equal destiny. While a genetic mutation doesn’t diagnose or guarantee cancer, we can effectively counsel patients on options to reduce their risk,” said Dr. Hulick. “Patients like Caryn often have a difficult journey, but it’s gratifying to see she has come through so well and is a strong example for others.”