Triple-Negative Breast Cancer Survivor
Survivor Forges Own Path and Helps Others
Karen Peterson did not follow a traditional route of treatment for her triple negative breast cancer (TNBC). Instead, she “chased the research, not the doctors,” and armed herself with the most current information. Her hard work paid off when she found a clinical trial that had not even opened. She now writes a TNBC blog about this specific type of breast cancer to support others in their journey.
During my annual mammogram in January 2015, the radiology team told me they thought they saw something, so they did an ultrasound. Because I had dense breast tissue, they took a biopsy of the suspect tissue. It came back positive for breast cancer. Next, I had the test for HER2, but that came back negative. Originally, I thought that was great, but I had no idea what it meant. I’d never heard "HER2" before.
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.
The surgeon recommended a lumpectomy and a combination of two chemotherapies that were standard of care for TNBC. At the time, before we’d done our research, I didn’t understand that TNBC wasn’t like other breast cancers. I didn’t know it was aggressive and a killer and that it often became resistant to chemotherapy. And, I found out there were no targeted therapy or hormone therapy treatments for it.
I started with the chemotherapy combination but, just before the fourth round, I was hospitalized with an emergency port removal due to an infection and pulmonary embolism. I was given a blood thinner and completed my chemotherapy.
Though I worried I was making emotional choices instead of informed decisions, I went on with life and chose to have a double mastectomy with reconstruction. I also decided to start school and work toward a certificate in coding for a career in the technology field.
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.
I made it my mission to find a trial. I called up research investigators left and right. I mostly got gatekeepers, and some never even returned my call. One day, a principal oncologist answered an email I sent him with a phone call. I made it easy for the principal investigator to figure out if I would be a good candidate for any trials because I organized my tumor genomic testing, biopsy report, latest scans and all medical records chronicling my journey. He mentioned a new immunotherapy trial coming “down the pipeline“ that was already open to other cancers and planned to include TNBC patients soon.
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 percent 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 percent of women with breast cancer. Somehow I was in that four percent. I felt like I won the lottery.
Explore clinical trials on your own. Don't be content to go with what the doctor recommends. Trust your intuition. Organize all of your information and make it easy for the doctors to review. Don’t be afraid to knock on doors and make calls to get the information to make an informed decision. Ask for genetic testing. Research your cancer. Make a wish list of what you want and stick to it.
Today, I give back by writing my own TNBC blog to share what I learned. We need to share more information with each other. We need more treatment choices than just chemotherapy. I can’t say that the way I did things is right for everyone, but it worked for me.