Molly Zwerdlinger changed careers to save lives.
The first life that she saved is her own.
Zwerdlinger trained to be a lawyer specializing in estate planning, but she also applied her legal instincts—collecting information, planning ahead, and being proactive—to her health care.
Molly Zwerdlinger
“I always suspected there was some kind of genetic cancer component in our family,” she says. I had an aunt on the maternal side of my family who died of ovarian cancer at the age of 32, leaving behind two young children. My grandmother on the paternal side had breast cancer. So, I decided to be tested for the BRCA gene mutation.”
Mutations in the tumor suppressor BRCA genes are relatively rare in the general population, occurring in one out of every 400 people. But the incidence of the gene mutation increases to one out of 40 people of Ashkenazi Jewish descent.
For Zwerdlinger, getting tested for the BRCA mutation was a long, arduous journey that ultimately led her to take life-changing actions. Now, she would like to make that experience easier for others.
That is why, when Patrice Hauptman, Executive Director of the Colorado Gynecologic Cancer Alliance, asked Zwerdlinger to become the Community Outreach Coordinator of Bringing Radical Cancer Awareness to Our Jewish Community (BRCA), Zwerdlinger did not hesitate.
“I said to her, ‘This is perfect timing,’” she recalls. “We are meant to save lives together.”
Today, 18 months into its existence, the BRCA Initiative has provided 140 people with their BRCA test results. An additional 98 people are awaiting results that are in process. A couple hundred are just starting the process of being tested. Through BRCA, there is no out-of-pocket cost for the testing.
Of the 140 who have received the results, five tested positive for the mutation. Perhaps most interestingly, of those five people, three had no history of cancer in their family.
Only through testing did they learn that they have more than an 80 percent chance of breast cancer and a 45 percent chance of ovarian cancer, and if they are male, an increased chance of prostate cancer. There is also an increased risk of pancreatic cancer and melanoma for both men and women.
Only through testing did they get information that may help them change their lifelong approach to cancer screening and health care.
In her new role, Zwerdlinger is reaching out to people with the message that knowledge is empowering. The attorney who helped people plan for death is now helping them plan to live.
In search of a ‘ticking time bomb’
Zwerdlinger was 23 years old when she began her quest to be tested, only to run into one hurdle after another.
At the time, being of Ashkenazi Jewish heritage was not enough to immediately qualify her for genetic testing.
It was also not enough that she had had family members with cancer. Guidelines required that the family had to be a close relative, like a parent or sibling. She had to see three doctors and a genetic counselor before she found someone who would refer her for testing. And because she did not meet the guidelines, insurance would not cover the cost. It took two years and $3,000 out of pocket to learn that she was positive for the BRCA mutation.
“Oddly, when I finally found out, I was ambivalent,” she recalls. “I had never even interacted with someone with the mutation, so I didn’t even know the risk level. And then I received a call from an oncologist, and I realized this is much more serious than I thought.”
The oncologist explained to Zwerdlinger that she had three options. She could do nothing. To her, that was not an option.
She could begin multiple annual screenings including mammograms every six months and pelvic ultrasounds to check for breast and ovarian cancer.
The third option was to have prophylactic surgery, removing body parts that were at most risk.
Zwerdlinger was 25 years old when she heard her options. At that point, she says, “I panicked because I realized how serious this diagnosis was.”
Therapy helped get her through the panic phase. She chose option two, and, for 10 years during which time she had her son, she underwent multiple screenings every year. In early 2023, a routine mammogram found a fast-growing mass in her breast. She was 35 years old.
“Even though they discovered that it was benign, I was scared enough to move from option two to option three,” Zwerdlinger says. “I had a five-year-old son, so I chose a double mastectomy. I had such a sense of relief because immediately, my chance of having breast cancer dropped from 86 percent to two percent, which is lower than the general population.”
Nine months later, she had a total hysterectomy.
“I felt even more relief after the hysterectomy,” she says. “With breast cancer, the constant monitoring is effective. But the chance for undetected ovarian cancer just seemed like a ticking time bomb.”
‘If you save one life, you save the entire world’
From left: Molly Zwerdlinger, Patrice Hauptman, Dr. Christine Walsh, architect of the CU Genes Study
The clinical work of the BRCA Initiative is at the University of Colorado Medical Center and is supported by a coalition of nonprofits including JEWISHcolorado, the Staenberg-Loup Jewish Community Center, Sharsheret, the Kaballah Experience, and Colorado Gynecologic Cancer Alliance.
The Initiative had its nascent origins ten years ago when Patrice Hauptman took the position of Executive Director at Colorado Gynecologic Cancer Alliance and discovered that her board was wrestling with one of its greatest challenges—the lack of effective early screening for ovarian cancer.
“The chances that you will catch ovarian cancer early are very small,” Hauptman says. “That’s why it’s so deadly because it’s easy to ignore what seem to be vague symptoms.”
What was clear was that prevention of ovarian cancer might best be done through the identification of high-risk individuals. In the ensuing years, two developments made that possible.
Clinically viable genetic testing, which cost upwards of $9,000 a decade ago and would only be covered by insurance after a person was already diagnosed with cancer, dropped in price dramatically. And the U.S. Preventive Services Task Force issued a new recommendation—that people with Ashkenazi Jewish heritage should consider testing for the BRCA gene regardless of their family history of cancer.
“The old standard for getting tested was that you had to have a family history,” Hauptman says. “But a woman could inherit the BRCA gene from her father’s side, and if there is no history of cancer, they would have no idea their cancer risk.”
That is why both men and women are encouraged to sign up for the BRCA Initiative. They must be over the age of 25 with at least one Jewish grandparent.
“If someone tests positive, they can be on high surveillance—they have choices,” Hauptman says. “With everything that Jewish people are facing, this is something we can do to save a life right now in Colorado.”
By being tested, Molly Zwerdlinger may have saved more than just her own life. She spread the news throughout her family because, she says, “These genetic mutations have the ability to wipe out an entire family tree.” Some of her immediate family members tested positive for the BRCA gene mutation and have made changes in their health care screenings.
“Genetic testing saved my life and helped save other members of my family,” Zwerdlinger says. “You have heard the Talmudic saying, ‘If you save one life, you save the entire world.’ With the BRCA Initiative, I have this amazing opportunity to save lives. What a privilege it is to do this work.”