'Never heard of it': Families speak out about rare cancer

Sam Sheppard does not want other families to go through what happened to her daughter Isobel

Before 15-year-old Isobel Sheppard died from an extremely rare cancer, she left a file on her phone entitled, 'If I Die Young'.

The teenager from Bury St Edmunds, Suffolk, had been diagnosed with synovial sarcoma in early 2020 after she suddenly struggled to walk.

In the file she detailed she wanted memory jewellery to be given to her friends and a celebration of her life with fireworks to be held on her birthday each year.

Her mother, Sam Sheppard, along with two other women in the county, are keen to educate people on this rare cancer during Sarcoma Awareness Month this July.

Isobel was 15-years-old when she died

At the end of 2019 when Isobel was 12, she complained her left leg had been feeling numb, but Mrs Sheppard said the family was not too concerned.

However in January 2020 while at school Isobel rang her parents to say she could not walk.

After several hospital scans, an eight by five by 13 centimetre tumour was found in her groin which Mrs Sheppard described as "completely out of the blue".

Isobel had synovial sarcoma - a type of cancer that develops in cells around joints and tendons - which the family had never heard of.

She soon after underwent chemotherapy and had her entire left leg amputated.

"Isobel was an absolute warrior," Mrs Sheppard said.

"She did have down days but she coped with it admirably throughout,"

'She was wonderful'

While the treatment was initially successful for two years, Isobel unfortunately relapsed in October 2022 with several tumours found across her body.

"The x-rays they do every three or four months had missed [a tumour] - it was behind her heart," Mrs Sheppard said.

"They didn't realise it had come back until a very advantaged stage."

She died on 14 December, 2022 before the family found the file on her mobile phone with her final wishes which they carried out.

"Isobel was strong-minded, funny, sassy and she was kind, helpful and caring. She was wonderful," added Mrs Sheppard.

The mother encouraged anyone with any lumps to get them checked.

Holly Lewis was diagnosed with sarcoma after noticing a pain in her arm

Holly Lewis, 29, from Ipswich, noticed pain in her arm while driving in 2020.

Doctors soon after diagnosed her with osteosarcoma - a type of bone sarcoma that most affects the knee, thigh or shin bone or upper arm.

A tumour measuring at around 11cm was found in her armpit and shortly after her initial diagnosis doctors told her it was stage four.

"I think it was because of where the tumour was it was obviously pressing on the nerves that run through your shoulder, down to your elbow, wrists and fingers," she explained.

"I then got the diagnosis - and I remember the date so clearly - I was diagnosed on 7 January, 2021, 9 days before my 26th birthday.

"When you get told, you get hit with a wave of shock. You can't even begin to fathom the impact that that has."

Miss Lewis had four surgeries as well as six rounds of chemotherapy and is now fortunately stable despite the fact the cancer will likely never be cured.

She added she had never heard of sarcoma before she was diagnosed.

"I never thought I'd see the day where I get diagnosed with it," she said.

"I [think] it is so important to get yourself checked out and not to leave it."

Jack Harper left behind his two children and his wife Fiona

In 2020 Jack Harper, from Lowestoft, thought he was suffering from heartburn after gaining a small about of weight but it turned out to be angiosarcoma - a sarcoma that develops from the cells lining the blood vessels.

According to Sarcoma UK it accounts for just 0.05% of all cancer diagnoses.

His wife, Fiona Harper, explained a tumour the size of a fist was found on his heart and he would need open heart surgery at Royal Papworth Hospital in Cambridgeshire to remove this.

While the operation was successful and chemotherapy throughout that year saw Jack make improvements, by the end of the summer of 2021 he had declined again.

"We never found out how long we had left, we were always hopeful. We never ever thought it's game over for us," Mrs Harper said.

"We thought this cancer is not beating us - he's 36 and we've got two young children. We are not giving up."

'A beautiful man'

By January 2022, after a tough fight, Jack was placed on palliative care.

"In the April we sadly lost him, he got too poorly," Mrs Harper continued.

"I remember him saying to me a couple of days before, I can't do this anymore.

"He was a gorgeous guy, a beautiful man, so selfless."

Mrs Harper with the couple's son Arthur, nine, will walk the length of the South Downs Way in Sussex starting on 20 July to raise awareness and money for Sarcoma UK.

Their daughter Agnes, five, will also occasionally join them during the walk

She explained raising awareness was important to the family and encouraged anyone with any health concerns to ensure they were checked.