My diagnosis of neuroblastoma when I was 14 happened rather accidentally. I was a competitive dancer and very active in sports my first year in high school and had no symptoms of cancer or any illness. It wasn’t until my mother, who is a nurse, came into my room one morning to wake me for school and happened to touch my stomach and felt a mass that we realized something might be wrong. An imaging scan of the area showed a large tumor—thought to be a teratoma—attached to one of my ovaries. The 15-pound tumor and 1 ovary were removed, and a biopsy of the tumor showed I actually had stage IV neuroblastoma.
The diagnosis was especially shocking because neuroblastoma is so rare in children older than age 10. In fact, my oncologist didn’t have a lot of experience treating someone my age, but he approached my treatment the same way he did for his younger patients. I was prescribed an aggressive course of therapy: standard combination chemotherapy to debulk my disease; followed by high-dose chemotherapy and radiation therapy with stem cell rescue; and a targeted monoclonal antibody therapy, which kept me in and out of the hospital for about 18 months. And because the relapse rate is so high in children with high-risk neuroblastoma—I was told my chance of survival was between 30% and 50%—I was prescribed a daily dose of difluoromethylornithine over the next 28 months.
Charting a New Life Course
Today, 6 years later, I remain cancer-free, and my health is stable. However, I have some long-lasting remnants of my treatment that cause me some discomfort, including neuropathy and spinal and joint issues, but I don’t let them stop me from remaining physically active and pursuing my goals. My main concern is that my therapy has thrown me into premature menopause and left me infertile. I am taking care of the symptoms of menopause with estrogen replacement therapy and have come to terms with the realization that motherhood for me will have to be achieved in a nontraditional way, but at age 20, and with years of medical school ahead of me, I’m leaving that issue for another time.
And although cancer has robbed me of some aspects of the life I had envisioned, it has also presented me with a future I couldn’t have imagined. Although I was always interested in some aspect of medicine as a child having been exposed to the field through my mother’s profession, being diagnosed with a life-threatening cancer at the age of 14 and understanding I could die gave me a new perspective and appreciation for medicine and for the physicians who treat cancer.
Throughout my treatment, which at times was very difficult to endure, I knew how lucky I was to be surrounded by such a caring medical support system, which kept me positive even at some very low points, and I was aware not every young patient was having the same experience. I saw the difficulty other young patients with cancer and their families were having and knew many of those patients did not survive. Some of the factors that made the difference in who lived and who died, including a lack of funding for childhood cancer research, convinced me to pursue a career in pediatric oncology and give back to the community that has given so much to me.
Making a Difference
In 2014, while I was still in high school, I became involved with the St. Baldrick’s Foundation
(stbaldricks.org), which raises money to fund research in childhood cancer, as one of its National Ambassadors. The experience led to a research internship program at The University of Texas MD Anderson Cancer Center, where I was able to use my own neuroblastoma cells to learn how the cells switch on natural killer cell function and trigger antitumor cytotoxicity and to study potential novel immunotherapeutic approaches to treat the cancer in the future.
This past summer, I obtained an internship at a research laboratory at Washington University School of Medicine, where I am a student, to study the immune system of patients with pediatric myelodysplastic syndrome to determine the mechanism causing this leukemia and how that knowledge may lead to more effective treatment. I will continue my internship next summer.
These experiences have shown me how the research efforts made now can have such a huge impact on so many patients in the future, and I want to be part of that future.
My cancer diagnosis at such a young age has also taught me the value of living in the moment and appreciating every opportunity that comes my way. I know tomorrow is not guaranteed, and I make the most of today.
When I was undergoing treatment, my oncologist told me he could fairly accurately predict how well his patients were going to do based on their mental outlook, and that idea of remaining positive in the face of terrible adversity has really stuck with me. I remember the difficult times during my treatment, when I thought I might die, and how staying positive helped me, as well as my family, get through those times. They act as a reminder to me of the importance of remaining positive as I go through challenges in my life today.
I learned other lessons from my oncologist as well, including compassion for those less fortunate, kindness, patience, and perseverance. They are the qualities I hope to bring to my own oncology practice.
Ms. Bendesky is a student at the Washington University School of Medicine in St. Louis.
Editor’s Note: Columns in the Patient’s Corner are based solely on information The ASCO Post received from the survivors interviewed and should be considered anecdotal.