As told to Jacquelyne Froeber
october is Breast Cancer Awareness Month.
December is my birthday month. It was also the month I scheduled all of my annual health exams, including my mammogram.
But I guess December 2014 was busy. (I burned all my journals from that time, but that’s another story). I don’t remember why I didn’t get a mammogram, but I didn’t get one until June 2015.
The day after the exam I received a phone call. There was something abnormal on the images and I needed to have a biopsy. I was a nurse, so I knew it wasn’t good news, but I had the biopsy that week and went about my normal routine.
As a hospice nurse on call, my schedule was pretty consistent. I worked seven days, seven days off, and most importantly, I took a nap between 2 p.m. and 4 p.m.
My husband and kids knew not to call me during that time, so when my phone started ringing during my nap, I got pretty upset. It was the supplier’s office. “This is not a good time to talk,” I said.
“You have breast cancer,” the woman on the phone said.
“Okay, can you call me again tomorrow? I’m on call at 5.”
She was surprised. But she said it’s okay. I hung up, rolled over and went back to sleep.
I know it sounds strange to fall asleep again, but my patients depended on me. And I needed that nap. The next day my provider called me and I took the time to listen. He said the cancer was small enough to perform a lumpectomy. We then scheduled the surgery for the following week.
However, that Thursday I noticed new image requests in my patient portal, but no one could tell me why they were ordered.
When I finally got the nurse on the phone, I started asking her questions and she interrupted me. “Don’t worry about testing, I do this all the time,” he said. “All you have to do is show up on Monday.”
I paused and felt the pain of being fired. “You may do this every day, but I don’t get diagnosed with breast cancer every day,” I said. “And I’ll call the doctor and let him know why I won’t have surgery with you. Have a nice day.”
I hung up the phone. My mind and heart were racing. I had just fired my supplier! But I couldn’t stay in an office that didn’t answer my questions… right? Tears welled up in my eyes.
My husband helped me calm down and we found another provider. I would have to wait another month for the lumpectomy, but it was fine with me. During that time, I had the other tests they ordered, including a PET scan. That scan showed that the cancer had spread to the bone.
I had stage 4 breast cancer.
When I heard the news I was shocked. In one week, I went from “small” cancer and a lumpectomy to plans for a bilateral mastectomy and chemotherapy. I learned that stage 4 cancer, also called metastatic, meant I would likely need ongoing treatment for the rest of my life.
Amidst all the confusion and depressing news, there was one bright spot. My daughter had just found out she was pregnant even though she had been told she couldn’t have children. The idea of holding my grandson in my arms gave me more hope that I could get through the surgeries and treatments and also maintain my quality of life so I could enjoy time with my family.
Months passed and after the baby was born, I put him on my chest despite the double mastectomy and we slept like babies on my days off.
I continued to work as much as I could during chemo, but it was difficult. I felt weak. I couldn’t even drive to work; my husband had to take me. But I put on my scarf and kept going. In 2016, I received the best news: my scans showed no evidence of disease.
In 2017, I felt well enough to move, and my husband John and I moved to a small town in eastern North Carolina. I got a new job as a palliative care nurse.
We were only there about six months when I had a blood clot in my left lung. Then, because of the blood thinners I was taking, I had a mini stroke. And then another devastating blow: my provider told me I could no longer work.
I was devastated. He had been working for almost 40 years. I was the main breadwinner for our family. Now, I was going to have no income or insurance.
I spent the next seven days searching for financial resources that could help me pay for my medical treatments. I applied for disability, and I got it, but it didn’t take effect for five months.
Then I came across an organization called Living beyond breast cancer which offered funding and resources for people with metastatic breast cancer. They were hosting an annual conference in Philadelphia and I decided to go.
At the time, I didn’t really know much about metastatic breast cancer outside of my personal experience. Nor had I met another black woman with metastatic breast cancer. When I entered the conference room, I was impressed by the large number of people there. I probably looked like a deer in headlights going from stall to stall, but everyone was so friendly and helpful. I got the financial guidance I needed. I heard stories from women who were eight and nine years into their diagnosis and were thriving. I joined other black women with metastatic breast cancer. All that changed my life.
After the conference, I signed up for anything I could do in terms of promotional work for the organization. I traveled throughout the United States and learned about the disease and new treatments and brought information to my rural community in North Carolina. I learned that breast cancer rates are higher in women living in rural areas and that mortality rates are also higher compared to the national average. And these numbers are worse for women of color.
It was clear to me early on that there was a lack of information about black people and metastatic breast cancer. But it was not clear why. In 2019, I began working with an epidemiologist, Marina Pomare Kaplan, on a research project and survey that focused on the reasons why Black people were not included in these clinical trials.
Unfortunately, Marina passed away in 2020. I thought that meant our research efforts were over, but a few months later, the Metastatic Breast Cancer Alliance contacted me and wanted to move forward.
we start on BECOME research project based on the research that Marina and I had been doing. BECOME stands for Black Clinical Trial Experience and Opportunities for Meaningful Engagement. And what we found in our survey was a big surprise. The general reason black people weren’t participating in clinical trials? It was because no one asked us to participate. Nobody was talking to us.
From there I thought: let’s find a way to get this information to suppliers. We planned an event the day before the San Antonio Breast Cancer Symposium in 2022, which is basically the largest breast cancer conference in the world. My goal was to have 100 people there, or fill half the seats in the room.
But that didn’t happen. The event was so packed that I had to grab spare folding chairs. People lined the wall to listen to our investigation.
As I looked at the different faces in the room, I was overcome with emotion. I was so proud to bring all of these people (providers, pharmaceutical representatives, women of color) together in the same room to learn about the importance of including Black people in clinical trials for metastatic breast cancer.
I thought about how far I had come on my own journey, although I hate to call it a journey. It just doesn’t sound right when you’re talking about being bald and undergoing chemotherapy. But being a patient advocate helped me help others when I could no longer breastfeed.
None of us signed up to be in this club. But we all deserve representation and research to help us live better lives with metastatic breast cancer.
Resources
BECOME – Black Clinical Trial Experience and Opportunities for Meaningful Engagement
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