A child with a cancerous lesion 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 sarcoma – a type of cancer which about 5,300 people are diagnosed with in the UK every year.
“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 benign 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 desmoid-type fibromatosis, a rare type of soft tissue sarcoma cancer.
Leila 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: that my daughter has cancer, what is going to happen next, what is the treatment?
“It was a really upsetting time for all the family.”
What is sarcoma?
- Sarcoma is a type of cancer that can appear anywhere in the body
- There are two main types – soft tissue and bone
- The most common symptom is a lump that is growing or changing
- It is the third most common cancer in children, but it is more commonly seen in middle-aged or older people
Sarcoma specialist nurse Luke Davies, from Swansea’s Singleton Hospital, said the condition was complicated.
“There are also over a hundred different subtypes so getting a diagnosis can be difficult,” he said.
“So people go by living with the condition and very often the relatives and friends of the person who suffers have not heard of the condition.”
On Saturday, Nansi’s family are walking 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.”
The Welsh government said it had had laid out a plan to improve cancer diagnosis and treatment.
It said: “We are also implementing the Cancer Research Strategy for Wales (CReSt) and its rare diseases action plan.
“This work is part of the UK efforts to support the development of new innovations in the diagnosis and treatment of rare cancers, including clinical trials.”