Zoë Handscomb-Edwards was 16 weeks pregnant when doctors discovered the lump on her leg was PEComa, a cancer so rare it affects just 1 in a million people each year.
What 44-year-old Zoë Handscomb-Edwards first thought was a pulled muscle during a yoga class turned out to be something far more devastating: a rare and incurable cancer diagnosis.
Zoë, a digital marketing manager from Bournemouth, England, was 16 weeks pregnant when she sought medical advice about a golf ball-sized lump on her leg. Initially dismissing it as a minor injury, she was stunned to learn she had perivascular epithelioid cell tumor (PEComa)—a rare form of soft tissue sarcoma.
According to Sarcoma UK, PEComa typically develops in the uterus, liver, gut, or skin, and occurs in just one out of every million people. In Zoë’s case, a genetic mutation in the TFE3 gene makes her specific diagnosis even rarer and more difficult to treat.
“When a doctor said, ‘we think it’s a sarcoma,’ that was the worst day of my life,” she told Daily Mail. “I burst into tears as soon as I left the office.”
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At seven months pregnant, Zoë underwent surgery to remove the tumor at The Royal Marsden in London. But just one month after giving birth to her daughter, Penelope, in July 2023, a PET scan revealed that the cancer had already spread—including to the same leg where the tumor had been removed.
“Just after giving birth, they were telling me I could be dead in six months,” Zoë said. “They told me I had between six months and two years to live. I thought I wouldn’t see Penelope grow up.”
Her husband, Rob Handscomb-Edwards, has been helping to raise funds through a GoFundMe campaign to support her continued treatment. So far, Zoë has undergone four rounds of radiotherapy, a hip replacement, and hormone therapy. Her cancer is now classified as stage 4 and incurable, though the couple remains determined to explore experimental treatments.
The family is aiming to raise more than $46,000 to pay for a year of care—much of which isn’t covered by the National Health Service (NHS). As of publication, they’ve raised over $11,000. The money also helps fund alternative approaches such as acupuncture and testing for side effects of trial drugs.
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In a hopeful update, Zoë shared that she’s been approved for compassionate access to an experimental treatment—meaning the manufacturer will cover the cost of the drug for as long as she can tolerate it. She’s due for a follow-up scan in three months to determine whether her body is responding to the therapy. If not, she’ll need to move to a second drug, which is not covered and must be paid for out of pocket.
Zoë is also using cold plunges and other wellness techniques to support her body during treatment.
“I’m not chasing a cure. Every doctor I’ve spoken to says this cancer is incurable,” Zoë said. “But in my mind, I’ve thrown the prognosis out the window. I’m just living. This August will mark two years—and I’m still here, doing okay.”
Her husband echoed that hope in an update on their fundraiser:
“Living with cancer isn’t linear—some weeks Zoë’s gardening, playing with Penelope, and working; others, she’s in bed recovering from surgeries or dealing with treatment side effects,” he wrote. “But we believe these targeted therapies give her the best chance at more time—with Penelope, and with me.”
Though PEComa tumors are typically benign, malignant versions like Zoë’s are exceptionally rare. Researchers believe the condition is linked to mutations in genes such as TSC1, TSC2, and, in Zoë’s case, TFE3.
“Because the cancer is so rare, we’re in uncharted territory,” Rob added. “But the longer she can stay alive, the greater the chance new treatments or clinical trials will become available.”