"You can be your own advocate," says Karen Peterson of finding a clinical trial that decreased the size of her tumors
Karen Peterson knew breast and ovarian cancer ran in her family, but the last thing she expected was that she, too, would be forced to fight for her life.
It was in January 2015 and Peterson, then 49, was living in Harlem, New York, and spending a lot of time with friends and family after her divorce.
But the social worker’s life was turned upside down when a routine mammogram revealed she had breast cancer.
“I had no clue what the differences between breast cancers were,” Peterson, now 54, tells PEOPLE. “I thought all breast cancers were the same. I literally thought everybody was under the same umbrella.”
Her grandmother had died from it when she was 45 years old and very few people in her family even made it to 50.
“My birthday is February 24, so I didn’t have my initial surgery — which was a lumpectomy — until March. I wanted to make sure I lived until I was at least 50,” she says.
Peterson then thought she would go through radiation “and go on about my beautiful life,” but those dreams were put on hold when she got the results of her pathology report.
She was sitting at a cafe with her younger sister when she found out she had stage 1 triple-negative breast cancer, and that it would most likely return.
After four rounds of chemotherapy, she decided that “my breasts were my enemy” and got a double mastectomy to reduce the chances of the cancer’s return from 15% to 4%.
Just as Peterson’s life was starting to resemble the one she had before she became sick, a blood test and PET scan in April 2017 revealed tumors were now in her lungs, ribs, spine and pelvis. At this point, she had learned everything she could related to metastatic breast cancer, so when she was given the grim news, she felt like she was actually prepared — and motivated.
“I had spent hours and hours every day learning everything about new clinical research,” says Peterson, now 51. “It was frightening how prepared I was.”
Instead of relying only on doctors, Peterson learned about genomic testing, which identifies DNA changes within a tumor. That information then helped her find potential options for targeted therapies and clinical trials. While Karen’s initial oncologist didn’t think it was necessary, she sought additional opinions, and got a genomic test.
With the results from that test, she contacted researchers directly and learned about a trial that was coming up involving immunotherapy. She started it on July 30, 2017.
Eight weeks later she had flu-like symptoms and felt extremely fatigued and run-down. But it didn’t take long for new scans to show that the clinical trial had worked. Her tumors had shrunk by 72%.
“I never gave up,” says Peterson, who as of September showed no evidence of disease in a CT scan. “Look where I am now. I won’t stop fighting for a cure.”
At this point, a radiologist hasn’t been able to find any tumors in her lungs, ribs, spine or pelvis. Now in “observation mode” says Peterson, she will go in for scans and blood work every 90 days.
“I feel fortunate and humbled,” she says. “I was resilient to be able to fight my way through the obstacles and faith to understand the options I had and use the tools that were available to get where I needed to be.”
She’s now trying to pay it forward by talking to women around the world who are looking for advice on how to handle their diagnoses.
“You can be your own advocate,” she says. “I’m not rich, I wasn’t connected, and I don’t have a fairy godmother. I just did my research and made it happen. It’s my time to help others.”