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Mother Survives Two Years After Rare PEComa Diagnosis in Pregnancy, Seeks Funding for Experimental Therapies

Her husband has launched a £40,000 fundraising drive to secure experimental targeted treatments not available on the NHS

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Overview

  • Zoë Handscomb-Edwards was diagnosed with PEComa at 16 weeks pregnant after a painless golf ball–sized lump was initially dismissed as a pulled muscle.
  • Surgeons removed a 20cm tumour from her leg in May 2023 while she was seven months pregnant, followed by a planned C-section to deliver her daughter, Penelope, in July 2023.
  • A PET scan shortly after surgery revealed the cancer had spread, and she was given a six-month to two-year prognosis that she has now exceeded.
  • She continues to receive palliative radiotherapy two years later as doctors maintain that the cancer is incurable.
  • PEComa affects fewer than one in one million people annually and has no established treatment pathway under the NHS, prompting reliance on private fundraising for experimental therapies.