By Helen Le Caplain Kelly Williams
A mum-to-be who thought she’d simply pulled a muscle in her leg at yoga was horrified when it turned out to be a rare cancer – and given just six months to live. Zoë Handscomb-Edwards was in a yoga class with a friend when she spotted the lump on the back of her right thigh and decided to get it checked out with her GP. Doctors initially believed it to be a DVT, something that can be dangerous in pregnancy , but an ultrasound and MRI at 16 weeks suggested it was a sarcoma. A biopsy on the 20cm mass revealed it was an ultra-rare cancer called PEComa, with a grim prognosis of between six months and two years. Husband Rob Handscomb-Edwards, 37, is now fundraising for ‘experimental’ drugs unavailable on the NHS to give Zoë as much time as possible with her family, including 23-month-old Penelope. The 44-year-old digital marketing manager is sharing her story to encourage anyone with unusual lumps and bumps to get them checked out by a doctor. Zoë, from Bournemouth, Dorset, said: “I was in yoga with my friend, and I said ‘what do you think this is?’. “The lump was bigger than a golf ball, it wasn’t painful and I had no side effects from having it. “We both felt it and she said ‘it feels like you’ve just pulled a muscle’. “I then found out I was pregnant, which was incredible, we were so happy. I remember saying to one of my friends ‘I should probably get this lump looked at’. “It was for peace of mind so I could focus on being a mum. “It took three months to find out what it was. That was so difficult, waiting every day just feeling awful thinking ‘what the hell is this in my body?’ “When a doctor said ‘we think it’s a sarcoma’ when I was 16 weeks pregnant that was the worst day of my life, it was absolutely horrendous. “I was told the stats of PEComa is fewer than one in a million people worldwide each year. “I remember walking out of the hospital and bursting into tears in the carpark.” Zoë first found the lump in October 2022 and then went to her GP in February 2023, finding out the devastating malignant diagnosis in May 2023. The mum was referred to the sarcoma clinic at Bournemouth Hospital in Bournemouth, Dorset, and then moved under the care of The Royal Marsden in Chelsea, London. Surgery to remove the tumour in May, while seven months’ pregnant with Penelope, removed the 20cm mass and a subsequent PET scan in August revealed it had spread and Zoë’s prognosis. Zoë said: “It was horrifying having surgery while carrying Penelope, it was so scary. “A PET scan in August, after having a planned c-section in July, showed the cancer had spread. It was another worst day of my life. “They told me I had between six months and two years to live. At that time I’d just had my baby and they’re telling me I could be dead in six months. “My mum and sister were with us helping with Penelope. It was just awful – we sat in the garden and cried and hugged each other. “I remember thinking I was going to die and I wasn’t going to see Penelope grow up. “The thought of not seeing her grow up is what always gets me, but it also keeps me going. “Every moment I have with Penelope and Rob, and my friends and family is precious. “From that moment they were saying treatment was limited as there’s no treatment pathway for PEComa. “Radiotherapy gave me some more time. I said I wanted to travel so we took Penelope at three months’ old, while I was on maternity leave, and did a three-week trip around Europe, which was amazing. “I’m not trying to chase down a cure, obviously if my cancer went away that would be incredible but every doctor I’ve spoken to has said it’s incurable. “In my mind I’ve thrown the prognosis out of the window and I’m just living, this August will be two years and I’m doing ok.” Having undergone surgery on her leg and palliative rounds of radiotherapy, Zoë is now wanting to try ‘experimental’ treatments unavailable on the NHS. Zoë said: “The radiotherapy bought me some time. This is how I’ve made peace with my cancer, we make a plan and do something that buys me more time. “Chemotherapy doesn’t really help with PEComa. I’ve found other PEComa patients from around the world on Facebook and we share our information about what’s helping them. “Unfortunately most of them are not covered on the NHS because they’re considered experimental. We’re decided on a £40,000 goal for a year’s worth of targeted treatment. “The outpouring of love from everybody keeps me going now it’s a waiting game. It’s been a really tough two years, but I’ve made my peace with it. “It’s really important to raise awareness of rare cancers. It’s so important to get any unusual lumps or bumps checked out as soon as possible.” You can donate to Zoë GoFundMe page here: https://www.gofundme.com/f/together-for-zoe