Misdiagnosis leads to discovery of desmoid-type fibromatosis, inspiring charity climb on Mount Snowdon.
Misdiagnosis leads to discovery of desmoid-type fibromatosis, inspiring charity climb on Mount Snowdon.
A girl was diagnosed with a rare tumor on her foot – after doctors mistook it for a wart.
Nansi Alys was taken to the doctor at the age of three after her mum Leila Evans noticed a small lump on Nansi’s toe.
Doctors told Leila that the lump was a wart – but in the months following, the lump continued to grow.
Leila, from Criccieth in Gwynedd, Wales, persisted – until in 2022, when a different GP saw the lump and believed it to be a tumor.
“In May 2021, I took her to the doctor because I found a little wart-type growth on her toe,” said Leila.
“We went back and forth, and they said they thought it was a wart and there was nothing to worry about.
“In June 2022, we were seen by another doctor who said that it looked like a benign cyst.
“He transferred us to a specialist at Bangor Hospital, and he said it looked like a benign cyst and there was nothing to worry about.
“He said they could take it out or leave it and keep an eye on it.
“I said that I’d prefer for it all to be taken out and tested. I had no idea what it was – it was just growing and growing.
In 2023, Nansi underwent a surgery to remove the tumor, and after a six week wait, the family received answers.
Nansi was diagnosed with a desmoid-type fibromatosis (DF) – a rare type of intermediate soft tissue tumor, which sits somewhere between non-cancerous and cancerous.
DF itself is not specifically a cancer, but comes under the umbrella of sarcoma – a group of rare cancers that originate in the bones or soft tissue.
“Everything was going around in my mind – what if my daughter has cancer?” said Leila.
“I wish the doctors would have listened to me.
“It was scary for the whole family – she’s my baby and she was only six years old at the time.”
After receiving the shocking diagnosis, the family looked to charity Sarcoma UK for information and support.
“When we found out, the doctor told us that if we’re going to Google it, make sure we use the Sarcoma UK website, so that’s what I did,” said Leila.
“Within a week of Nansi’s diagnosis, Sarcoma UK had posted us a lot of information about what it was and what the next steps were.
“They helped us track our appointments, and told us about what we could do as a family to help her – they’ve been really good.”
On Saturday (17/08), inspired by Nansi’s story, the family climbed Mount Snowdon, raising over £1,300 for Sarcoma UK in their five hour climb.
“I’ve never gone up Snowdon before, so if I was going to do it, it had to be for a good cause – and what could be better than raising money for Sarcoma UK?” said Leila.
“It was a beautiful day. To begin with, I did struggle, but it was amazing. All I had in my head was ‘I’m doing it for Nansi.’
“I’m over the moon that we’ve been able to raise this much. My target to begin with was £500, and that was hit in the first few days. I’m extremely happy.”
Produced in association with SWNS Talker
