Turning Experience Into Progress: One Patient's Role in Advancing Uterine Cancer Research

Uterine cancer, including endometrial and uterine sarcoma, is the most common gynecologic cancer in the United States, and rates continue to rise. Early symptoms include abnormal bleeding, bleeding after menopause, pelvic pain or pressure, unusual discharge, or changes in menstrual cycles. Investigating symptoms early can mean catching the cancer early, when it is most treatable. But many people do not recognize uterine cancer symptoms, or struggle to have their concerns taken seriously. Delays in diagnosis remain all too common.  

Zenia Dacio-Mesina knows that delay firsthand. Her symptoms were easy to dismiss at first, especially during a pandemic that complicated doctor appointments. In early 2021, a missed period and then heavier bleeding than she had ever experienced pointed to perimenopause after a google search. Persistent exhaustion was thought to be a consequence of work burnout. By the time frighteningly heavy bleeding and crushing fatigue brought her to a doctor in March 2022, she was told it was likely fibroids. A hysterectomy was scheduled for months out, but an ER visit happened first. A PET scan and hysterectomy eventually confirmed the real diagnosis: stage 4 uterine leiomyosarcoma, a rare and aggressive subtype of uterine sarcoma. 

"I never heard of leiomyosarcoma until I was diagnosed with it," she says. She has since found a Facebook group of fellow "leiomyosarcoma warriors," but has yet to meet another patient with her exact diagnosis in person. The rarity shapes her treatment options, too: "There aren't enough of us for clinical trials, so we're lumped in with other sarcoma patients." 

Too few cases mean trials are hard to design and easy to deprioritize. Too little data means even basic questions about a disease remain unanswered. Out of necessity, rare cancer research must get inventive, including approaches like patient-driven research and dedicated registries built specifically to gather what no single study site ever could on its own. Building a dataset large enough to finally answer important questions and make progress toward improved diagnosis and care is a gap Zenia wants to help close. 

For Zenia, the numbers tell their own story: 65 infusions. 34 medications a day. Eight hospitalizations, nine ER visits. Behind each one is a side effect, a complication, a piece of a life rearranged — neuropathy, chemo brain that swallows words and names mid-sentence, a racing heart, nights too painful or too noisy in an ER hallway to sleep. "In the beginning, it was the fear of not knowing what could happen," she says. "Now I know the drill." 

But numbers are only part of it. Before her diagnosis, Zenia was an independent working mom in New York City, the kind of person who took the subway everywhere and rarely sat still. Almost overnight, that changed. She now uses a rollator to get around. Walking more than a block leaves her short of breath, her heart racing. Perhaps hardest of all has been watching her diagnosis ripple outward to the people she loves. "My son had to grow up quickly when I was diagnosed," she says. "I'm sad I'm not the strong, independent mom I used to be for him. Now he helps me instead of the other way around." 

This is the part of the story that a medical record alone can't hold. A chart can show that a patient received 65 infusions; it can't show what each one cost her, or what it meant to her son to step into a caregiving role years before he should have had to. For many patients, the impact of uterine cancer extends far beyond the tumor itself. Treatment can affect fertility, sexual health, menopause, mental health, finances, work, and quality of life in ways that traditional research doesn't always capture.  

That is exactly what registries like OCRA's Living Lab for uterine and ovarian cancer are built to do: bring together the clinical record and the human one — medical history alongside the lived experience of survivorship — into a fuller picture of this disease. 

"If a researcher can learn something from me to make better treatments available, or to prepare patients better, I'm all for it," Zenia says. "My diagnosis cannot and should not be in vain.”

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About the Living Lab 

OCRA's Living Lab is collecting clinical data and patient-reported experience from people diagnosed with ovarian or uterine cancer. To learn more or sign up, visit Living Lab — Patient Registry | OCRA.