Karen Peterson was aware that breast and ovarian cancer have been running in her family and she would also have to go through it.
She ‘chased the research, not the doctors’ found a clinical trial that had not even opened.
In 2015, Peterson was living in Harlem, New York and enjoying her time with her family and friends after her divorce. But Peterson got the shock of her life when she discovered she had breast cancer.
”I had no clue what the differences between breast cancers were,” Peterson, she told PEOPLE. ”I thought all breast cancers were the same. I literally thought everybody was under the same umbrella.”
Her grandmother who also suffered from the same disease died at the age of 45 and there were very few people in her family who reached the age of 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 said.
Peterson was in a cafe with her younger sister when she found out she had stage 1 triple-negative breast cancer that would most likely return.
She told Patient Resource website, ”I went to a breast surgeon who suggested we wait for all of my tests to come back before starting treatment.
I got the pathology report but couldn’t understand it all. My sister helped me figure out each term in the report. I was diagnosed with Stage I triple negative breast cancer (TNBC). We researched and found out that TNBC was aggressive, affects African American and Latina women more than Caucasian women, and tends to come back quicker.
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”In November 2016, as I was walking to class, I felt a very sharp pain on the left side of my chest. I thought it was caused by the tissue expanders after the reconstruction. I mentioned it at my next appointment in January 2017. My bloodwork results indicated there was something wrong with my liver enzymes, and my CT showed spots on my lung and in my spine. In March 2017, I had a biopsy.”
”I started researching on my own and decided I would not chase after the best doctors. Instead, I would chase the research and try to find the best treatment for me.
I looked online, read the current research papers and contacted the researchers to ask if their findings were true. I knocked on a lot of laboratory doors to get answers. I contacted clinical trial doctors directly, even before I was completely confirmed as having Stage IV TNBC.
I built a plan to save my own life, which included the biopsy report, genomic testing and research from TNBC experts, articles and white papers.”
”In April 2017, my doctor confirmed I had metastatic TNBC. She recommended standard of care chemotherapy but, after all the research I’d done, I was not convinced her plan would save me. I told her I wanted to try clinical trials. I had recently met a TNBC blogger and, after sharing my ideas with her, I realized the best chance for me was to look for a non-randomized, Phase II, double-agent immunotherapy trial.”
”In July 2017, I became the first TNBC patient signed up for the new trial. It had been expanded to include TNBC metastatic patients who were either ready for first- or second-line treatment.
Some trials will exclude patients if they have been treated more than two times. That’s why I feel clinical trials should be considered earlier in the treatment journey.”
”By September 2017, my scans showed a 72 per cent decrease in the lesions. Today, the lung nodules are gone and so are the lesions in my spine. In 2017, immunotherapy was not considered a first-line treatment for breast cancer. Statistics showed that immunotherapy worked for only four per cent of women with breast cancer. Somehow I was in that four per cent. I felt like I won the lottery.”
”I feel fortunate and humbled,” 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.”
”You can be your own advocate, 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.”
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