6 days ago
I was given 6 months to live after a ‘pulled muscle' in yoga class – just days after I gave birth
ZOE Handscomb-Edwards was horrified to discover that what she thought was a pulled muscle was actually cancer.
At 44, mere weeks after having her first baby, Penelope, the mum from Dorset faced a devastating prognosis - she had as little as six months left to live.
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'It was the worst day of my life,' said Zoë, a digital marketing manager, as she remembered being told she had sarcoma, a type of cancer that starts in the bones and soft tissue.
It's a fairly rare illness, with around 15 people diagnosed each day in the UK - adding up to roughly 5,500 cases annually.
It all began in October 2022 when Zoë first spotted the lump on the back of her right thigh.
She 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'."
And then, Zoë found out she was pregnant.
"It was incredible, we were so happy," she said.
For "peace of mind" and so she could "focus on being a mum", Zoë decided to get the lump looked at by her GP in March.
In May 2023, three months after her first doctor's appointment, Zoe was told she had PEComa, a very rare type of soft tissue sarcoma.
"I was told the stats of PEComa is fewer than one in a million people worldwide each year," she said.
"I remember walking out of the hospital and bursting into tears in the car park," she added.
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.
The same month, while seven months pregnant with Penelope, Zoe underwent surgery to remove a 20cm tumour.
A PET scan in August, just a month after her planned C-section, revealed the cancer had spread, defining her prognosis.
"They told me I had between six months and two years to live," she said.
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"It was another worst day of my life," she added.
"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."
What is PEComa?
PEComa is a very rare type of soft tissue sarcoma that develops from the cells lining the blood vessels.
PEComa, also known as perivascular epithelioid cell tumour, is a very rare sarcoma that can occur anywhere throughout the body.
But, it most often occurs in the uterus, skin, liver and gut. It's most commonly associated with young to middle-aged adults.
It is also far more common in women.
The cause of PEComa is unknown, but researchers think that PEComa is caused by errors in genes called TSC1 and TSC2.
The mum was told her treatment options were limited as there is no reatment pathway for PEComa.
"Radiotherapy gave me some more time," she explained.
"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 okay."
After surgery on her leg and palliative radiotherapy, Zoë is now seeking 'experimental' treatments not available on the NHS.
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Husband Rob Handscomb-Edwards, 37 and has launched a GoFundMe to raise money for them, to give Zoë as much time as possible with her family, including now, 23-month-old Penelope.
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."
The symptoms of sarcoma cancer
The most common symptom of soft tissue sarcoma is a lump somewhere on the body.
But this doesn't necessarily mean cancer - there are all sorts of reasons for lumps and swellings, but it must always be checked by a GP.
The lump is usually found deep under the skin and might be felt before it can be seen.
The lump is usually solid to the touch, painless and hard to move around under the skin.
It will continue to grow and as it does, it can become painful.
Other symptoms depend on where in the body the lump is.
These can include:
Tummy pain and constipation if there is a sarcoma near the tummy
A cough that does not go away if there is a sarcoma near the lungs
Source: NHS
