Karen Peterson: Surviving Breast Cancer Thanks to a Clinical Trial

Age: 55New York, New York

I was diagnosed with stage I triple-negative breast cancer in January 2015. Just over two years later, the cancer returned; this time it was stage IV. That’s when I set to work educating myself about the latest research into the disease and its treatments. This knowledge empowered me to seek out a new clinical trial for immunotherapy, rather than accept standard treatment. Self-advocacy saved my life because there is currently no evidence of cancer in my body. By sharing my story, I hope to inspire other African American women to become educated about their health care and to get involved in cancer research and clinical trials.

Cancer runs in my family. I myself am a survivor of childhood cancer, I had a sibling who passed away from Wilms’ tumor at 18 months, my uncle passed away from colorectal cancer at 48, and my grandmother passed away from breast and ovarian cancer at 44. Because of this, regular breast cancer screening was a deeply ingrained part of my health care routine.

It was after one of my mammograms that I was diagnosed with stage I triple-negative breast cancer. The diagnosis was made just weeks before my 50th birthday. As a survivor of childhood cancer, I was confident that I would be able to beat this diagnosis, and I postponed surgery until after my birthday.

I had a double mastectomy [surgery to remove all of both breasts] and then four rounds of an aggressive chemotherapy regimen. The chemotherapy made me extremely sick, but after it was over I was able to return to my normal life.

In April 2017, a CT scan showed that the cancer had returned. Worse still, it had spread to my lungs, ribs, spine, and pelvis. I realized that when I had first been diagnosed with breast cancer, I had simply accepted the advice of my oncologist. I decided that this time I had to become more educated and make informed decisions based on facts and science.

I scoured the Internet and read everything that I could about the latest research on triple-negative breast cancer and the latest clinical trials testing cutting-edge treatments for the disease. I also sought a second opinion from another oncologist who told me that tests showed that there were a lot of immune cells in my tumors. She suggested that immunotherapy might be a good treatment option for me because it might help boost the cancer-fighting power of those immune cells. She also suggested genomic testing of my cancer to help determine what treatment would be most effective for me.
When my original oncologist dismissed these ideas and suggested the standard treatment that she used for all her patients, I transferred my care to the other oncologist.

Genomic testing showed that my cancer had an elevated number of mutations, which is unusual for breast cancer but made me a candidate for immunotherapy. So I started calling researchers and clinical teams running immunotherapy clinical trials that I found on clinicaltrials.gov.

Eventually, one of the researchers returned my call. He told me that he did not have a trial at that time but that I should consider trying to enroll in a new combination immunotherapy trial that he knew would open soon.

Twelve weeks after my diagnosis with metastatic disease, I entered the trial. I received an infusion of a type of immunotherapy called interleukin-2 (IL-2) to build a more powerful army of cancer-fighting immune cells. I then received another type of immunotherapy, a PD1 inhibitor, to release brakes on this army of immune cells. I have received no treatments for my cancer since March 2019.

I was told at the start of the trial that there was a 4 percent chance of its working. Eight weeks later, scans showed that the tumors had shrunk by 72 percent. Over time they shrank further, and there has been no evidence of cancer in my body for more than a year.

Participating in a clinical trial was like getting the Rolls Royce of medicine. I had an entire team, from the researcher to the infusion nurses, receptionists, social workers, and business advocates, making sure that I was cared for in every way.

The treatment I received through the trial saved my life, and I’m doing everything I can to pay it forward—telling everyone that becoming educated, advocating for yourself, and participating in cancer research and clinical trials can save your life.

I understand the resistance within the African American community to participating in research studies, but if we do not participate how can we complain that researchers are not working on our behalf? We need to be willing to take a chance and to demand to be included, and researchers and oncologists must make an effort to bridge the gap and include African Americans in clinical trials.