Girl's rare tumour was mistaken for a wart
- Published
A child with a rare tumour on her toe was mistakenly diagnosed as having a wart.
Nansi Alys was three when her mum, Leila Evans, first asked doctors about a growth on her foot.
Two years later, Nansi, from Criccieth in Gwynedd, was diagnosed with desmoid-type fibromatosis, external (DF), a rare type of soft tissue tumour.
"The doctors should have listened to me. I’m her mother, and a mother knows best," said Ms Evans.
Ms Evans first took Nansi to see a GP in May 2021, where she was told the growth was a wart.
But Ms Evans was unconvinced, and the lump kept growing.
In June 2022, she sought the opinion of another GP, who said it was a cyst.
The following year, in July 2023, Nansi had an operation at Alder Hey Children’s Hospital in Liverpool to remove the growth.
Tests were then carried out to determine what it was.
After a six-week wait, the family was given the news that Nansi had DF, a rare tumour which affects five or six in every million people.
Sarcoma UK classifies DF as an intermediate tumour, meaning it sits somewhere between cancerous and non-cancerous.
DF tumours can be locally aggressive and invasive, potentially causing significant health issues depending on their location and growth pattern.
However, they do not metastasise - meaning spread to distant parts of the body - like typical cancers.
While not specifically a cancer, DF tumours come under the umbrella term of sarcoma - a group of rare cancers that develop in the bones and soft tissue.
Ms Evans remains disappointed that she was not listened to.
"I would have liked it if they had listened to me," she said.
"I knew it wasn't a wart. A mother knows when something is wrong with their children."
But the diagnosis still came as a shock.
"Before Nansi was diagnosed I had not heard of the condition," Leila said.
"So getting the news a year ago everything was running through my mind.
"It was a really upsetting time for all the family."
On Saturday, Nansi's family walked up Yr Wyddfa - also known as Mount Snowdon - to raise awareness of the condition and to raise money for charity.
"If we can help one family or one child we will be happy," she said.
Charity Sarcoma UK said: “There's still a pressing need for greater awareness of sarcoma.
"Early diagnosis is critical for improving outcomes, yet many people, including some healthcare professionals, are unfamiliar with the signs and symptoms.
"We're committed to changing this.”
This article has been updated to reflect that Desmoid-type fibromatosis (DF), external tumours sit somewhere between cancerous and non-cancerous tumours.
- Published10 March
- Published15 April
- Published6 October 2023