In August 2014, just a few weeks after my 15th birthday, my body began sending me a lot of worrisome signals that life as I knew it would soon be over. The year before, I had developed a hematoma in my right femur, which was resolved with surgery. But now the pain I was experiencing in that leg was even more intense than it had been the previous year, making it difficult to walk, and I was also having unexplained chronic fevers.
Thinking the hematoma had recurred, my parents took me to see the surgeon who had treated the problem. An imaging scan of my leg showed a tumor the size of a tennis ball in my femoral bone, which was especially alarming since an MRI scan a few months earlier could find no presence of a mass in my leg.
Mafalda Von Alvensleben
The surgeon suggested I have a biopsy of the tissue. As I was coming out of anesthesia, I heard her say: “This is going to be the hardest year of your life.” The diagnosis was stage II Ewing sarcoma. Since this cancer has an overall 5-year survival rate of about 70% for teens aged 15 to 19,1 and drops down to around 30% with recurrence,2 my oncology team suggested a very aggressive treatment regimen.
The plan was to shrink the tumor and get me to surgery to save my leg. I underwent 17 rounds of a grueling chemotherapy with etoposide, ifosfamide, doxorubicin, and vincristine, followed by 7 rounds of radiation therapy. The treatment was so difficult, I questioned whether it was worth it or whether it would be better just to walk into the ocean. But my complete understanding of the long-term implications of having cancer didn’t hit me until the acute treatment phase was over, and I had to get back to my “real” life.
There is an expectation that cancer survivors should be extremely positive and have a new perspective on life after cancer, but the reality is that I just felt like a scared, ill, tired, 15-year- old who could not keep up with her peers. It took me a long time to feel normal again and even to understand what normal meant in my now irrevocably changed body.
Saving My Leg
I was fortunate to be treated at the UCLA Jonsson Comprehensive Cancer Center. If I had been treated somewhere else, it is likely my leg would have been amputated. Instead, the surgeons there removed the remaining tumor around the femur and placed allograft-prosthetic composite around my knee and hip joints; they secured the material with metal plates and screws to fuse it to my bone and restore stability and function to my leg.
Unfortunately, a few months later, one of the plates broke, fracturing my femur. I soon had revision surgery during which an intramedullary rod was placed to realign the bone and stem cells were transplanted from my pelvis to the femoral bone to promote healing. Despite three more surgeries to try to restore stability to my leg, the bone fractured again as I stepped off a curb during my freshman year in college. Finally, I underwent a femoral bone reconstruction using a thin-mantle titanium stem fixated with cement. So far, the bone has remained in place, although I still use crutches to reduce pressure on my leg and secure my balance.
Coping With the Aftereffects of Cancer
Nearly a decade after my diagnosis, I remain cancer-free, but the aftereffects of cancer will be with me for the rest of my life. Of course, I’m grateful to be alive. During active treatment, my main goal was to get through the next 2 hours without vomiting. Going up a flight of stairs or for a brief walk without getting winded was a victory.
Getting a cancer diagnosis at such a young age altered the trajectory of my adolescence and young adulthood. I missed all the happy milestones of being a teenager and going out with friends and on dates. And although my hair, eyebrows, and eyelashes have grown back, I have permanent and intense stretch marks from losing and gaining weight during my recovery. I also have a red-blue scar that runs from the top of my hip and curls around my knee from the six leg surgeries I’ve had, and I have struggled with body image. Growing up in the Instagram age, when it’s so easy to compare yourself with others, has been tough.
A Life-Changing Experience
Having cancer is a life-changing experience—physically, mentally, and spiritually—in both negative and positive ways. Getting this cancer diagnosis has greatly strengthened my familial relationships, especially my relationship with my mother. She was my fiercest advocate and stayed with me every day I was in the hospital, often sleeping in a chair by my bed or on a fold-up cot the hospital provided, and she was my voice when I was too ill to speak. Cancer has also made me a better and more compassionate friend, and I’m very grateful for that.
Through my studies in graduate school at Yale University, I became involved in disability justice and activism, which has helped me conceptualize and understand my identity as it relates to my physical and mental existence now. I’m also a peer mentor and help other students with physical and learning disabilities navigate the academic environment and accessibility accommodations.
I believe I am who I am because of and despite what happened to me when I was 15. I am proud of that person and wouldn’t have it any other way.
Ms. von Alvensleben lives in New Haven, Connecticut.
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.
REFERENCES
1. Cancer.Net: Ewing sarcoma—Childhood and adolescence statistics. February 2023. Available at www.cancer.net/cancer-types/ewing-sarcoma-childhood-and-adolescence/statistics. Accessed September 19, 2023.
2. Dana-Farber Cancer Institute: Childhood Ewing sarcoma. Available at www.dana-farber.org/childhood-ewing-sarcoma/#:~:text=The%20five%2Dyear%20survival%20rate,disease)%20have%20a%20poor%20prognosis. Accessed September 19, 2023.
