As a marathon runner, Kara Niewohner knows a thing or two about perseverance. This same trait that propels her through the 26.2 miles of each marathon course served her well through her quest for a second opinion after being diagnosed with triple-negative breast cancer with a BRCA2 mutation — one that led her to Dana-Farber.
‘I was blown away by what I was capable of doing’
Niewohner never envisioned herself as a runner. For a decade, severe ulcerative colitis limited her physical activity, led to frequent hospitalizations, and kept her close to home. In 2014, she had a total colectomy with ileostomy, which replaces the colon with an external bag for waste collection.
“It changed everything,” she says. “I came back to life.”
Her family soon relocated to Northern Virginia for her husband’s new assignment with the Army. There she reconnected with a friend from a previous duty station who invited her to join a mom’s running group. Soon they were training for a half marathon together.
The race “was wicked super fun,” Niewohner says. “I was blown away by what I was capable of doing.”
She continued running throughout each new duty station, rising early to get in her miles before her children — Jack, now 13, and Effie, now 12 — started their day. In November 2017, she and her husband, Andy, ran the Athens Marathon together.
“It was remarkable to think something I started doing to support a friend ended up being something that I really, really love,” she says.
Knocked off course
In April 2021, as the family was preparing to move from Killeen, Texas to Rhode Island, Niewohner’s life was knocked off course when she discovered a pea-sized lump in her right breast. She’d found a similar-sized lump in her left breast four months earlier that ended up being a benign cyst. This time, however, the diagnosis was much more (or just more) serious. A core needle biopsy revealed that Niewohner, 43, had triple-negative breast cancer with a BRCA2 gene mutation.
“I was so scared it was going to look the same way as when I had ulcerative colitis — spending months and months in the hospital, getting pricked and poked all over,” she says. “I even packed up my running shoes.”
She started her treatment plan including 16 sessions of chemotherapy at a hospital in Rhode Island and scheduled a double mastectomy. She was relieved the treatment was nothing like her fears; she didn’t have many side effects and started running again. But after four sessions, her chemotherapy came to an abrupt halt. Niewohner has an autoimmune condition called Gilbert’s syndrome, so she lacks the necessary enzyme to break down red blood cells which leads to elevated levels of the bilirubin . Her oncologist was concerned that the elevated bilirubin was an indication of liver damage caused by the chemotherapy.
‘Their cancer experts would know what to do’
Niewohner turned to Dana-Farber for a second opinion.
“I figured with my medical history and unique situation, their cancer experts would know what to do,” she says.
New patient coordinator Judith O’Brien was a voice of assurance for her and secured her medical records from Texas. The day before her double mastectomy in September in Rhode Island, Niewohner met with Erica Mayer, MD, MPH, director of Breast Cancer Clinical Research and a medical oncologist in the Breast Oncology Center at Dana-Farber Brigham Cancer Center.
“I wanted to know: Is it OK for me to have chemotherapy with elevated bilirubin? If I needed chemotherapy after surgery, would she be able to give it to me?” Niewohner says. “Dr. Mayer laid out my options. I felt very confident that no matter the results from my surgery, there would be some sort of treatment available.”
“We are fortunate at Dana-Farber not only to take care of patients who live nearby, but also to have the opportunity to participate in the care of patients who live at a distance and come to Dana-Farber for second opinion consultation,” Mayer says. “In this manner, we can help guide a patient’s care, especially if problems or challenges arise, even if they don’t live next door.”
Niewohner’s surgery was a success. Not only was there no trace of the cancer afterward but she didn’t need radiation or any further treatment.
“I was speechless,” Niewohner says.
To celebrate her good news, Niewohner ran the virtual Boston Marathon® just one month later.
“There were so many emotions in that run,” she says. “Each mile, I was bringing up a new memory: of my running friends in Virginia, the news I was cancer free, and feeling so proud of how far I had come.”
In December 2021, Niewohner returned to Dana-Farber for surgery with surgical oncologist Colleen Feltmate, MD, director of minimally invasive surgery in gynecologic oncology at Brigham and Women’s Hospital. Because the BRCA2 mutation put her at significantly higher risk of developing ovarian cancer, Niewohner opted for a laparoscopic salpingo-oophorectomy, a risk-reducing surgery that removed her ovaries and fallopian tubes.
In April 2022, Niewohner ran the Boston Marathon as a member of the Dana-Farber Marathon Challenge. Thanks to a match by her new employer, Run Newport, she raised nearly $11,000 for the Claudia Adams Barr Program in Innovative Basic Cancer Research so that Dana-Farber can provide the same care and hope for others as it had for her.
“The Boston Marathon was such a phenomenal experience,” she says. “The weather was great. I was healthy. I felt good and strong. People saw the word “survivor” on my singlet and cheered me on. I had a smile plastered on my face the entire time. It was a perfect day.”