Except for my right thigh being bigger than my left thigh, there was no hint that I was harboring advanced alveolar soft-part sarcoma when I was diagnosed with the cancer in 2019. I initially chocked up the discrepancy in my legs to the vigorous workouts I had received during my cheerleading days, but when I started feeling slight pricks of pain in my leg, I decided to get the problem checked out. Although an x-ray of my right thigh failed to turn up anything suspicious, a magnetic resonance imaging scan detected an 18-cm mass that was wrapped around my femur bone. Additional imaging scans followed by several biopsies determined I had stage IV alveolar soft-part sarcoma, and the cancer had spread to my lungs.
The news was so shocking, I couldn’t wrap my head around what I was hearing. I was just 24 years old, and except for the occasional minor twinges of pain in my right leg, I felt healthy. How could it be, I wondered, that I have an incurable, life-threatening cancer I had never heard of and that had no effective treatment?
Alexis Browning
The news kept getting worse. During a meeting with a sarcoma specialist at a major cancer center, I was told I had a life expectancy of between 10 and 20 years, which is not something a young adult in the prime of her life expects to hear. The oncologist told me about a clinical trial (Study ML39345; ClinicalTrials.gov identifier NCT03141684) at the National Institutes of Health in Bethesda that was investigating the immune checkpoint inhibitor atezolizumab in patients with advanced alveolar soft-part sarcoma. That trial gave me a lifeline—and hope. Not only did the drug appear to stabilize progression of the cancer, but it was also encouraging to meet with other young adults in the study who were doing well.
[Editor’s Note: Based on the results of Study ML39345, in 2022, the U.S. Food and Drug Administration approved atezolizumab (Tecentriq) for the treatment of adult and pediatric patients with unresectable or metastatic alveolar soft-part sarcoma.1]
Understanding the Risks and Benefits of Fertility Preservation
Concerned that atezolizumab posed a risk to my fertility, before enrolling in the trial, I decided to harvest and freeze my eggs. Although the procedure was successful in retrieving 16 eggs, the hormone medications I was given to stimulate the development of eggs in the ovaries caused my ovaries to swell and become so painful that I had to be hospitalized for a week. In hindsight, I should have spent more time researching the potential side effects from the fertility treatment, but I was anxious to start the clinical study.
During the 2½ years I was enrolled in the trial, the cancer remained stable. However, the constant pressure from the primary tumor on the nerves in my leg was causing so much pain that I decided to have it surgically resected. The operation completely removed the mass, and I no longer have cancer in that leg. I’m completely pain-free now, and my quality of life has been restored. After the surgery, I continued on atezolizumab and remain on the therapy today.
Dreaming of a Cancer-Free Life
Having an incurable cancer has been and continues to be very challenging, and I haven’t completely come to terms with how to move forward in my life. I am grateful that atezolizumab has kept the cancer in my lungs stable and confined, allowing me to lead a mostly normal life. However, cancer has robbed me of my dream of having a family. Even though I was able to preserve my fertility by having my eggs extracted and stored for future use, I recently learned I will not be able to stop treatment long enough to carry a pregnancy to term.
“I never know on any given day which side of the coin will dominate—feeling thankful or feeling scared.”— ALEXIS BROWNING
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I feel cheated and sad that having a child is most likely not in the cards for me. I’m especially sad that I won’t be able to make my husband a father.
My life is split between feeling thankful the cancer has not progressed and scared it will one day and there won’t be another effective drug option for me. Living with an incurable, terminal cancer at my age is daunting, and I never know on any given day which side of the coin will dominate—feeling thankful or feeling scared.
I am hoping that advances in research in this rare cancer will produce not just another treatment to keep the cancer from progressing, but one that will actually cure this disease. I would love not to have cancer anywhere in my body.
I realize how fortunate I am to have such a supportive and caring medical team and the loving support of my family and friends. The important role that all these caregivers play in patients’ lives cannot be overstated. It is their generosity and kindness that have carried me through these past 5 years and will carry me into the future—whatever that future may bring.
REFERENCE
1. U.S. Food & Drug Administration: FDA grants approval to atezolizumab for alveolar soft-part sarcoma. Available at www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-approval-atezolizumab-alveolar-soft-part-sarcoma. Accessed February 8, 2024.
Ms. Browning lives in Louisville, Kentucky.
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.
