Pregnant woman who suffered common exercise injury horrified to learn she has 'golf ball sized tumour' which will kill her
The first sign something was wrong came when Zoë Handscomb-Edwards, 44, found a lump on the back of her right leg in October 2022.
The digital marketing manager, from Bournemouth, was at a yoga class when her friend spotted the lump.
'The lump was bigger than a golf ball, it wasn't painful and I had no side effects.
'We both felt it and [my friend] said "it feels like you've just pulled a muscle"' she recalled.
But then, Ms Handscomb-Edwards found out she was pregnant with her first child, giving her the push to get the lump looked at by a GP for 'peace of mind'.
After an agonising three-month wait Ms Handscomb-Edwards was diagnosed with PEComa—an extremely rare type of soft tissue cancer—at 16 weeks pregnant.
She said: 'That was so difficult, waiting every day just feeling awful and thinking "what the hell is this in my body?"
'When a doctor said "we think it's a sarcoma" that was the worst day of my life. It was absolutely horrendous.
'I walked out of the hospital and burst into tears in the carpark,' she added.
After doctors at the Bournemouth Hospital identified the cancer, Ms Handscomb-Edwards was referred to The Royal Marsden in Chelsea to have the tumour removed.
Doctors successfully removed the 20cm mass from the expectant mother's leg in May 2023 whilst she was seven months pregnant with her daughter.
'It was horrifying having surgery while carrying Penelope, it was so scary', she recalled.
Despite the surgery being successful a scan just a few months later revealed a devastating prognosis.
'A PET scan in August, after having a planned C-section in July showed the cancer had spread.
'At the time I'd just had my baby they were telling me I could be dead in six months. They told me I had between six months and two years to live.
'I remember thinking I was going to die and I wasn't going to see Penelope grow up,' she added.
Following the heartbreaking diagnosis, the young family were told that there is currently no treatment pathway for PEComa—also known as perivascular epithelioid cell tumour.
Whilst surgery and multiple rounds of radiotherapy has brought Ms Handscomb-Edwards more time with her family, doctors have told her the cancer is incurable.
'The thought of not seeing Penelope grow up is always what gets me, but it also keeps me going.
'Every moment I have with Penelope and Rob, and my friends and family is precious,' she said.
'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.'
'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,' she added.
Now her husband Rob Handscomb-Edwards, 37, is campaigning for better awareness of the disease and fundraising with the hopes of raising £40,000 for a year's worth of targeted treatment.
'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,' Ms Handscomb-Edwards explained.
'Unfortunately most of them are not covered on the NHS because they're considered experimental', she added.
'But it's really important to raise awareness of rare cancers and get any unusual lumps or bumps checked out as soon as possible.'
According to cancer charity Sarcoma UK, PEComa is a very rare type of cancer that can occur anywhere throughout the body and develops from the cells lining the blood vessels.
The cancer most commonly affects young to middle-age women and is usually found in the uterus, liver and gut.
Common symptoms include a lump or swelling in the soft tissue of the body under the skin, abdominal pain and unexplained weight loss
If the cancer is growing within the female reproductive system, it can cause vaginal bleeding.
PEComa is currently thought to affect less than one in one million people worldwide each year.
Whilst the cause of PEComa is still unknown, researchers think that the cancer is caused by errors in genes called TSC1 and TSC2.
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