I had my first experience with cancer when I was just 3 or 4 years old and complained to my mother that my “tummy hurt.” I was diagnosed with Wilms tumor, the same cancer my 18-month-old brother died of before I was born. I remember being in the hospital for weeks at a time and being known by family and friends as the little sick girl who survived cancer. Nearly 47 years later, in 2015, I was diagnosed with stage 1 triple-negative breast cancer, and, once again, I was in the fight of my life.
Cancer is no stranger to my family. In addition to my brother, my uncle died of colorectal cancer when he was just 48, and my grandmother died of breast and ovarian cancers when she was 44. As a result, I was diligent about getting my routine cancer screenings on time and doing breast self-exams. Despite these efforts, just before my 50th birthday, a breast ultrasound found a suspicious mass in my left breast. A tissue biopsy determined that it was stage 1 triple-negative breast cancer. As a survivor of childhood cancer, I was sure I would be able to beat this cancer. I just didn’t realize how difficult it would be.
Karen Peterson
Becoming an Informed Patient
Initially, my oncologist recommended a lumpectomy, followed by a combination chemotherapy regimen of cyclophosphamide and docetaxel. She did not include doxorubicin because it had been part of my treatment for Wilms tumor when I was a child.
Because of my family history and my own early experience with cancer, I decided to have a contralateral prophylactic mastectomy. I just wanted the cancer to be completely gone, so I wouldn’t have to deal with it again. The chemotherapy left me bald, turned my nails black, and caused a pulmonary embolism. I barely survived the treatment, but in time, I got my normal life back. It was short-lived.
In 2017, a full-body CT image showed that the cancer had metastasized to my lungs, ribs, spine, and pelvis. This time, I was better prepared for the fight. It had always bothered me that when I was first diagnosed with breast cancer, I was in such total shock; I hadn’t really participated in the decision-making about my care. Other than the decision to have both breasts removed, I turned over all the other treatment planning to my oncology team. This time, I was determined to become an active participant in my care. And, more than that, I was determined not to make any decisions based on pure emotion, but rather on what the science was showing to be effective for my type of breast cancer.
I began searching the Internet, looking for the latest research on triple-negative breast cancer, and learned there were new drugs targeting specific tumor mutations. My oncologist was recommending the standard treatment for me, but I insisted on having my tumor sequenced to determine what treatment was most likely to work for me. I wanted personalized care. After she dismissed my request as being unnecessary, I transferred my care to another oncologist.
Genomic testing of my tumor found different gene-expression and mutation profiles, which made me a good candidate for immunotherapy.
I started calling researchers at various cancer institutions conducting clinical trials investigating immunotherapy in triple-negative breast cancer and got lucky. One of the researchers called me and said that, although he didn’t have a study for my specific tumor type, he knew about a clinical trial opening soon he thought could be beneficial for me.
The trial was evaluating a combination regimen of interleukin-2 and the PD-L1 inhibitor nivolumab in patients with advanced cancer. It turned out that the trial was custom-made for me. Although I was warned that the chance the treatment would be effective for me was a dismal 4%, I was eager to participate in the study.
Eight weeks into the trial, imaging scans showed that the tumors had shrunk by 72%, and over time, they continued to disappear. Since March 2019, follow-up scans can find no evidence of disease in my body. I was a complete responder to the therapy and am no longer on any treatment.
It is not hyperbole to say that the clinical trial saved my life.
Making Us Collaborators in Improving Health Equity
My experience has humbled me, and I want to pass my good fortune forward to help other cancer survivors struggling to find appropriate care become better educated about their disease and make informed decisions about their treatment. I also speak at cancer meetings to bring the patient perspective on the importance of being included in all clinical decision-making and making us collaborators in our care.
This is especially crucial for Black patients, who continue to have the highest mortality rate of any racial and ethnic group for all cancers combined and for most major cancers.1 As a society, we need to do better to ensure health equity for all patients. I understand that the long history of medical racism in this country has discouraged Black patients from participating in clinical trials. The fact that many clinical trials are conducted at large, academic centers, and not in local communities where most patients with cancer live, also contributes to low minority participation in clinical studies. Poverty, low-socioeconomic status, inadequate or no health insurance, and lack of diversity in the oncology workforce further compound the problem.
It is up to all of us—advocates, researchers, and clinicians—to change this dynamic and work with minority communities to further scientific innovation and improve health-care delivery to save more lives.
We need you to help us become better informed participants in our care. We want to collaborate with you. Give us the chance.
Ms. Peterson lives in New York.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from patients and should be considered anecdotal.
REFERENCE
1. U.S. Department of Health and Human Services Office of Minority Health: Cancer and African Americans. Available at https://minorityhealth.hhs.gov/omh/browse.aspx?lvl=4&lvlid=16. Accessed February 3, 2021.
