Karen Peterson was diagnosed with stage 1 triple-negative breast cancer in 2015. After undergoing three months of chemotherapy with difficult side effects, she made the decision to get a voluntary double mastectomy to remove the cancer.
By 2017, her cancer had returned aggressively. She had tumors in her pelvis, lungs, and spine. Peterson was diagnosed with stage 4 (metastatic) triple-negative breast cancer, which was considered incurable.
“I went from stage 1 to stage 4 in less than two years. My life was on the line. I had a 4% chance of survival,” Peterson told Health.
Peterson’s medical team at the time was resistant to exploring other treatment options. So, she took her care into her own hands, directly contacting medical researchers leading clinical trials. She landed in a full-time, early-stage clinical trial using immunotherapy drugs. After eight weeks, Peterson had a 70% reduction in tumor size.
Now, nearly eight years cancer-free, Peterson talked to Health about her treatment journey and what she learned about finding the right clinical trial for her.
What was your initial reaction to your first breast cancer diagnosis?
Peterson: To be transparent, I treated my initial stage 1 diagnosis like it was a sprained ankle.
My grandmother passed away from metastatic breast and ovarian cancer at a very early age, so I knew it ran in my family. I was always on top of going to the doctor and getting my mammograms.
I was also a childhood cancer survivor. I had Wilms tumor at age 3, and I had beaten it with no relapses. I was on a pretty good run. So I was like, “Oh, you know, a cancer diagnosis.”
I went online to read about the side effects [of chemotherapy]. I thought, “That’s not going to be me. I’m not going to have metal taste, I’m not going to lose my hair, I’m not going to suffer from fatigue. None of these things are going to bother me.”
And even though my grandmother didn’t survive her diagnosis, I felt her presence overlooking my journey; she was going to make sure I was alright. So that was my attitude; I didn’t have this devastating reaction. I went into automatic mode.
After you received your second diagnosis, how did you want to do things differently?
Peterson: I made a vow to myself: No matter the conversation, no matter who you’re speaking to, no matter whose presence you are in, no matter what information you are digesting, you will make an informed decision. You will not make any decisions based on emotion.
It has to be science-based, outside of faith, outside of resilience, outside of all of these other intangibles. I needed scientific proof that I was going in the right direction.
So, what did that look like? It was 2017. There was no FDA-approved treatment plan for triple-negative breast cancer other than chemotherapy and radiation. So the door was wide open for me to think about different treatment options, whether that was immunotherapy, clinical trials, a PARP inhibitor, whatever.
I made sure I understood the root cause of my cancer—did I have genetic mutations? Did I have a higher mutational burden, meaning I would be a great candidate for immunotherapy? I needed to clarify these things so that I could make an informed decision about my treatment options.
What are some of the steps you took to explore your treatment options?
Peterson: I talked to a lot of people. I read an article about a woman named Stefanie Joho, a colon cancer survivor who found success with immunotherapy. I thought to myself, here’s a woman who’s gone through immunotherapy, and she was almost counted out, and it worked for her. If it worked for her, even though we weren’t diagnosed with the same disease, there’s a possibility for me.
I met her down the line after my clinical trial, and I thanked her because her story gave me hope.
There was another woman in New Jersey who was a triple-negative breast cancer patient. She had made the news for getting into a clinical trial quickly. I called her up and asked her to go to lunch, and she came to Harlem. We went to lunch and she explained to me exactly how she did it.
So I had the patient perspective. Then, I went into labs and sweet-talked my way past security and had conversations with researchers about clinical research. I had second and third opinions.
By the time I got to a doctor, I knew their research, I knew patients they had treated, I knew their case studies. I wanted to have conversations about their case studies and how I could apply their research to my particular case. I embraced personalized oncology.
What did you learn about finding clinical trials?
Peterson: I had to learn what kind of clinical trial to look for. Again, I talked to researchers. They were very honest.
One researcher told me that if I were trying to do immunotherapy based off my biomarker scores, most people in my position at the time were responding with double agents and not monotherapies. So, I knew that any clinical trial only offering monotherapy was off the table.
Then I talked to another patient, and they told me the difference between phase 1, phase 2, and phase 3 [of trials]. In phase 3, you get either the standard of care or the experimental drug. They said, “You have stage 4 triple negative breast cancer. Can you survive and wait for that?”
So, phase 3 was off the table for me. I needed the medicine, so I looked at only phase 1 or phase 2 trials with double agents.
Once you find a clinical trial, getting accepted is another challenge. What would you say is the most important factor for getting into a trial?
Peterson: The first thing that jumped out at me when I was looking at clinicaltrials.gov and reading the descriptions of trials was the exclusionary criteria. I was going to make sure that I did nothing that would exclude me from a trial.
In 2017, the rule was that you could only have two lines of treatment. If you had more, you would be excluded from the clinical trial.
Working with my oncology team, my goal was to stay healthy enough [without additional lines of treatment]. If I wasn’t suffering from any symptoms and my tumors weren’t growing, I could stay off additional drugs until I got into a trial.
You also have to be ready to do a 30-day washout of any drugs you’re on before being considered for particular trials.
How did you land on your clinical trial?
Peterson: After I was turned away from a few trials, I decided to cut out the middleman. I made a list of people who were leading trials targeting immunotherapy with only double agents, and I cold-called them and sent them my medical reports.
One of those doctors was Daniel Cho, an oncologist at New York University in New York City. He didn’t have an ongoing trial that was a right fit for me, but he said he had a clinical trial coming down the pipeline that wasn’t listed yet, and asked if I would be interested.
Because I had the resilience to send him the report on a cold call, I had gotten to the top of the pack, and I did it in really quick time. I got my diagnosis confirmed in April 2017, I got my genomic testing in May, and by June, I had Dr. Cho on the phone with my information.
By July 30, 2017, I was the first triple-negative breast cancer patient in the nation to join that particular trial. The trial included multiple cancers—melanoma, small cell lung, bladder—and there were 35 triple-negative. There were five responders, and I was the only complete responder.
How did receiving treatment through a clinical trial compare to the more standard route you went the first time?
Peterson: Comparing the treatment in terms of staff interaction, the nursing staff was about the same. Both nursing staffs were attentive, did their job, and were compassionate.
What was different was the clinicians. With the clinical trials Dr. Cho and his staff led, I felt like it was a well-oiled machine. They looked after me in there.
The very first week I was there for my infusion, I was there every day, Monday through Friday, for several hours. I had a lot of blood being taken, a lot of data being taken.
And there was additional staff. I had a nutritionist, a social worker, a person who made sure my insurance didn’t lapse, a mental health professional, and a masseuse. I didn’t have all these things at a regular treatment center.
They were very meticulous and intentional about making sure that I was safe. I had never experienced anything like that. I felt like I had my own private watch team.
