This Woman With Metastatic Breast Cancer Did Her Own Research to Find a Clinical Trial to Fight the Disease
Imagine being told that you have stage 4 metastatic breast cancer with tumors in your bones and lung. That happened to me, and though I felt heartbroken, I wasn’t broken by the diagnosis. Instead, I was empowered. I already knew the conversation I had to have with my oncologist and the direction I wanted to steer my treatment plan even before I heard those dreaded words, “your cancer has returned.”
That’s because this wasn’t my first—or even my second—battle with cancer.
When I was three years old, I said to my mom, my tummy hurts. I was diagnosed with Wilms’ tumor, a childhood cancer of the kidney. Prior to my birth, my brother passed away at two months old from the cancer. After surgery to remove my right kidney, chemotherapy, and radiation, and back-and-forth hospital visits for a year, the cancer was gone.
Fighting breast cancer the first time
Fast forward to January 2015. I was living in New York City, and one month shy of my 50th birthday, I was diagnosed with stage 1 triple negative breast cancer, an aggressive form of the disease. Luckily, it was detected early. My grandma had passed away in her 40s from metastatic breast cancer, and because it runs in my family, I had been proactive about getting mammograms.
Still, even though my cancer was in an early stage, I was shocked, upset, and very fearful. I had a lumpectomy and received four rounds of chemotherapy from April to June of that year. My treatment had been rough: I had burns from chemotherapy, endured a pulmonary embolism, discovered that my port wasn’t working, and my hair fell out. So my doctor and I decided that it was best for me to have a preventive double mastectomy, to reduce the odds of the cancer returning and going through an ordeal like that again.
The next year, I was cancer-free. The year was fabulous, and I was looking forward to having reconstructive surgery on my breasts in January 2017. So, I didn’t think much about it when I started feeling chest pain the fall before my surgery. At the time, there were expanders in my chest to make reconstructive surgery easier, and I figured the pain was related to them.
Yet after my breast reconstruction, the pain in my chest continued. I thought, there’s something funky here. My doctor suggested a blood test. The results showed that markers in my blood indicated my cancer might be returning. I needed a CT scan, but the last thing I wanted to do was go back and revisit having breast cancer. In February 2017, the scan showed multiple areas of possible cancer activity.
Making decisions after a devastating diagnosis
I still didn’t have a diagnosis. I had a feeling, though, that it was cancer—and that it could be bad. I needed to be prepared. Instead of waiting for a diagnosis, I started reaching out to doctors and diving into articles and research. I couldn’t sit in a doctor’s office and be a deer in headlights. I wanted to be armed with info.
I had a biopsy in March. In April, at age 55, I was diagnosed with stage 4 triple negative metastatic breast cancer—meaning the cancer has spread beyond the breast and nearby lymph nodes. In my case, it spread to my lung and bones. I had just graduated from a coding program, and I was hoping to find a job doing coding for a health care app. But after my diagnosis, navigating the world of breast cancer—and empowering myself with information to help survive—became my full-time job.
Having metastatic breast cancer means the cancer is so advanced, it's considered incurable, and the goal is to find treatments that extend life and improve quality of life. My goal, based on my research, was to be matched to a clinical trial that would involve immunotherapy—a new type of treatment that activates the immune system to attack the cancer, rather than attacking the cancer itself.
My oncologist gave me immediate pushback. She wanted to start me on the standard treatment, which was chemo. The conversation was contentious. I felt so betrayed that this was not a collaborative decision, but I had to suppress my feelings in the moment. I don't know if she didn't value my voice because I'm Black or because I was a patient. But I'm proud of myself that I didn't waste my energy to figure it out and sit and fight her. That energy was valuable, and I needed it to save my life. I needed to gather my diagnosis and my medical records and move on.
Why was I sure a clinical trial was my best and only option? Right before my biopsy, I went to another doctor for a second opinion. The doctor didn’t want to meet with me at first because I didn’t have a diagnosis yet, but I was able to talk my way in. She looked at my breast tissue and explained that I have a lot of fibrous cells, an unusual finding that suggested I might do well with immunotherapy.
But first, she said, I had to get a comprehensive genomic profiling (CGP) test. The test found that I had intermediate tumor mutational burden (TMB) and other key mutations, like PMS2 and PIK2RI, which can result in breast cancer. Now I had the facts, and I could make a fact-based, not emotion-based decision. I was ready to do this with my primary oncologist, but she didn’t want to hear it.
Doing research to find an immunotherapy trial
I divorced my team and found another doctor for a third opinion. (The doctor I went to for my second opinion told me, "You want a clinical trial and immunotherapy, but I don't have that," which is why I couldn't return to her.) That third doctor gave me confidence that I was on the right path by seeking out a clinical trial, but suggested that I pursue double-agent (a combination of two drugs) rather than single-agent immunotherapy, as the research showed that women like me were most responsive to this type of treatment.
To be matched with a clinical trial, the traditional route is to go through your oncologist and apply online. Instead, I researched names and I applied by myself. Unfortunately I was getting no callbacks. When I did hear, I was told my tumor wasn’t big enough.
Then I heard about an investigator at New York University who was running a clinical trial on the cancer mutations that I had. If I put myself in front of him, I thought, all he can say is no or put me in touch with someone else. I sent him all my info and got a call back—I was shocked. Unfortunately, he did say no; I didn't qualify for that specific trial. But he had another coming down the pipeline that wasn't yet public. And I was a perfect match for it.
At the end of July 2017, I was the first triple negative breast cancer patient in the nation entered into this trial. I took an IL2 drug (Bempeg) and an PD 1 inhibitor (Nivolumab or Opdivo). The IL2 helped build the army of fighter cells that I had, and the PD 1 took the brakes off my immune system so that my fighter cells could recognize and kill the cancer cells. At the start of the trial, I was given a 4% chance that the therapy would actually work.
At first, I developed flu-like symptoms, facial puffiness, and fatigue. But the doctor said it looked like my immune system was reacting, and that was a good sign. Then, after he did the first scans at the eight-week point, there was a 72% reduction in my tumors. It was shocking. I can remember him putting up the scan from my lungs and bones. He said, "In all of my time being a doctor, this is the first time I've seen this. Look at your bones—they look like they're healing!"
The news has only gotten better. I finished the clinical trial in April 2019. As of June 2020, I was officially declared a "complete responder" to the immunotherapy treatment. My scans show that I am free of lesions. I am very, very thankful. Right now, I'm in observational mode, meaning I visit the principal investigator every four months for a checkup, as well as CT scans and a blood test. I'm hoping that next year, this interval will be stretched to every six months.
How to empower yourself in the face of a breast cancer diagnosis
Precision medicine, or specifically precision oncology, is not just something special people should get. I’m a regular woman, and pushing for genomic testing was something I thought would be a tool that would help me make a science-based decision. My experience is a teachable moment. It’s a classic instance of a patient sitting in front of their doctor saying they want to be a valued part of the treatment plan, but whose voice is undervalued.
To find out more about cancer, I recommend organizations like the American Cancer Society and the nonprofit Cancer Commons if you have metastatic cancer. They can help you find the best treatment, and you can even ask on-site oncologists questions about where to begin and what your options might be.
If you've been diagnosed with metastatic cancer, you need genomic testing. Just like a CT scan and biopsy, this test gives you information you can use in determining your treatment, and it will clue you in to whether you have genetic mutations that qualify you for a clinical trial—or point you to a certain drug that may not be on your (or your doctor's) radar.
Also, don't walk this walk yourself. I recommend connecting with a local support group or licensed social worker. Visit the websites of the American Cancer Society, Susan G. Komen Breast Cancer Foundation, Cancer Research Institute, and SHARE. Be kind to yourself and fill your mind and spirit with affirmative words. It's so easy to become overwhelmed with anger, fear, and isolation. All of those experiences are normal. Remember, there are thousands of others out there who are going through scenarios that are similar.
I'm now a patient advocate, and an audience member once said this to me while I was on a speaking panel: "It's the doctors job to provide the patient with information, let them do their job." My response to that was, "What better job can one have than saving their own life?" The satisfaction and confidence I get from knowing that I played a significant role in extending my life, when all the odds were against me, is priceless.
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