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Whitstable girl’s rare cancer missed by GPs for a year

A courageous teenage girl has been hailed a “miracle” after beating an extremely rare cancer misdiagnosed by GPs for a year.

Amber Munday-Hoctor, from Whitstable, was just eight when she complained of pain in her right foot, but it was dismissed as a strain by doctors.

Amber Munday-Hoctor and her mother Kate, from Whitstable. Picture: Sarcoma UK
Amber Munday-Hoctor and her mother Kate, from Whitstable. Picture: Sarcoma UK

Eventually, the limb began to swell and the pain intensified to the point the now-15-year-old could not bear weight on it.

Her mum Kate Munday-Hoctor said: “We attended multiple GP and hospital appointments for nearly a year, and Amber was initially incorrectly diagnosed with benign ganglion (a cyst).

“She underwent surgery, and six weeks later, we were given the terrible news that Amber had synovial sarcoma and that some of the tumour remained in her foot.”

There are an average of 79 cases of synovial sarcoma diagnosed every year in England and it makes up just 0.03% of all cancers.

The youngster then underwent five surgeries, six weeks of radiotherapy and numerous other traumatic procedures before being declared cancer-free in 2020.

Amber Munday-Hoctor, from Whitstable, was misdiagnosed by GPs for a year. Picture: Sarcoma UK
Amber Munday-Hoctor, from Whitstable, was misdiagnosed by GPs for a year. Picture: Sarcoma UK

“Amber is a miracle; she has beaten the odds,” her parent added.

“But, if she had the correct procedure the first time around, she would not have had to endure those invasive procedures, and there would have been less risk of recurrence.”

She now suffers from PTSD, and her mother is campaigning for immediate psychological support for families of children with cancer.

Mrs Munday-Hoctor explained: “Parents and families should be able to access immediate psychological support when their child receives a cancer diagnosis, and this support should be ongoing throughout their family’s journey.

“Currently, parents are left with next to nothing while trying to navigate the shock, trauma and heartbreak of the situation they're faced with, at the same time as caring for their poorly child and family.”

Amber Munday-Hoctor, from Whitstable, underwent gruelling treatment for a sarcoma in her foot. Picture: Sarcoma UK
Amber Munday-Hoctor, from Whitstable, underwent gruelling treatment for a sarcoma in her foot. Picture: Sarcoma UK

“There is much research that shows parent wellbeing correlates with child wellbeing.

“Yet, parents are having to manage their wellbeing while being confronted with their worst possible nightmare – there is a 12-week waiting list for psychological support from the NHS.

“For the first few weeks after Amber was diagnosed, I felt I could barely function.”

Motivated by her own experience, she founded the Sarcoma Parents Support Group in March of this year.

Since then, the group has grown to more than 20 members who meet every month virtually and share their experiences.

Kate Munday-Hoctor (right) from Whitstable, pictured with Sarcoma UK ambassador Jake Quickenden and her mother Marty. Picture: Sarcoma UK
Kate Munday-Hoctor (right) from Whitstable, pictured with Sarcoma UK ambassador Jake Quickenden and her mother Marty. Picture: Sarcoma UK

There are also regular expert speakers, and opportunities to engage in therapeutic support.

Kate is also currently working on the development of a local support network for parents of children with cancer as part of her role at Changing Minds Kent.

Kate has founded the Synovial Sarcoma Fund in collaboration with Sarcoma UK to fund research into her daughter’s cancer subtype.

Her campaigning has even seen her work with Sarcoma UK ambassador and X Factor star Jake Quickenden.

The mum has also been shortlisted for Support Group Champion of the Year in Sarcoma UK’s Shining Star 2024 awards.

Asked what she would like to see made available to the parents of child cancer patients, Kate said: “There should be a fast-track service for parents and families that has immediate access and offers ongoing specialist support for parents, children and families.”

Kate Munday-Hoctor (fourth from right) from Whitstable with other Sarcoma UK supporters. Picture: Sarcoma UK
Kate Munday-Hoctor (fourth from right) from Whitstable with other Sarcoma UK supporters. Picture: Sarcoma UK

On late diagnosis, she said: “If you are a health professional and a parent returns to you over and over again, concerned over their child’s health, they must be taken seriously.

“We may not be medical experts, but we are experts on our own children; it astounds me how often we are disregarded.

“Sadly, we are not alone with Amber’s story, with many sarcoma patients receiving a mis or late diagnosis, meaning survival rates are much lower than they could be.

“As sarcoma and its many subtypes are so rare, less funding is invested in research, which means a lack of treatment progression.”

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