I Was Told I Had Cancer. I Didn’t. But My Rare Condition Wasn’t Simple

By Michelle Patroni

In 2009, I was diagnosed with Stage IV uterine leiomyosarcoma. A CT scan revealed a 28-centimeter tumor in my uterus and multiple nodules in my lungs. A lung biopsy confirmed malignancy. Doctors said chemotherapy would begin immediately.

But when I arrived at MD Anderson Cancer Center in Houston, Texas, for treatment, everything changed. As part of their standard intake process, the pathology department re-reviewed my biopsy slides. They reversed the diagnosis. I didn’t have cancer. I had a condition I’d never heard of: Benign Metastasizing Leiomyoma (BML).

BML is rare. Only around 160 cases have ever been documented in medical literature. It behaves like cancer — spreading to the lungs or other organs — but under the microscope, it looks like a typical uterine fibroid. That contradiction makes it easy to misdiagnose and hard to understand.

I began treatment with a medication that suppresses estrogen. After my first injection in 2010, I entered medical menopause, and my tumors shrank. By 2013, my uterine mass had reduced to about 21 centimeters. I discontinued treatment, and for the next 10 years — from 2013 to 2023 — I had no therapy, no scans, and no follow-up.

What brought me back to MD Anderson wasn’t pain or symptoms. It was a photo. In late 2023, after volunteering at a community event, I saw a picture of myself. My abdomen looked distended. That photo scared me more than any symptom had. I called MD Anderson.

A CT scan revealed my uterine mass had grown back — this time to 28 centimeters, the same size it had been at the start. The initial theory was that estradiol (a form of estrogen still produced in small amounts after menopause) had caused the growth.

I restarted injections in November 2023. After three injections, I stopped again. When I returned for a follow-up in April 2025, my tumor had once again grown back to 28 centimeters. I had also lost seven pounds during that time with the help of Zepbound, a medication prescribed to assist with weight loss.

That detail — the tumor returning despite weight loss — challenged the original theory. If estradiol from fat cells was fueling the tumor, then losing weight should have reduced tumor size. But it didn’t. That suggests something else is happening: my body, even more than a decade after menopause and prior medical menopause, remains hormonally sensitive. My tumors still respond to and rebound from hormone suppression.

Because of how rare and biologically unusual my case is, in April 2025 MD Anderson invited me to participate in its APOLLO Moon Shots Program — a prestigious research initiative focused on decoding rare and complex tumor behavior through long-term data and precision medicine. Being asked to participate was deeply validating. It meant my experience could help guide better understanding of rare diseases and possibly improve outcomes for future patients.

What I’ve learned is that BML doesn’t always follow rules. It’s “benign,” but it spreads. It’s rare, but it doesn’t go away. It reacts to hormone changes in ways we don’t fully understand. And it’s deeply misunderstood — not just by the public, but sometimes by the medical system itself.

My story raises important questions:
– Should BML patients receive lifelong hormone suppression, even post-menopause?
– Should we re-evaluate hormone sensitivity years after stopping treatment?
– And how many women have been misdiagnosed, or overtreated, because their rare tumor mimicked something malignant?

BML changed my life. Not just once, but again and again — after misdiagnosis, after treatment, after a decade of quiet. I’m not done learning from it. I hope my story helps someone else be heard sooner, diagnosed correctly, and treated with more clarity than I had at the beginning.

About the Author:
Michelle Patroni is a rare disease advocate and long-term survivor of Benign Metastasizing Leiomyoma.
She is a graduate of the University of Pennsylvania and a participant in MD Anderson’s APOLLO Moon Shots Research Program.
Michelle volunteers at a cancer center in Tennessee with her certified therapy dog, Barkley, and is the founder of a nonprofit working to restore rural transportation systems in Appalachia.