Doctors said it was growing pains, but it turned out to be cancer: 11-year-old girl’s pain diagnosed with rare bone tumor left her afraid she would die

A schoolgirl who thought she was having standard ‘growing pains’ was eventually diagnosed with cancer.

Ivie Adams, 11, feared she was going to die after being heartbreakingly told she had a 26cm tumor growing in her leg.

Chemotherapy made her sick and cruelly robbed her of her long, brown hair, although she is now cancer-free.

Ivie had to learn to walk again after her grueling treatment, which saw her leg bone replaced with an artificial implant.

Recalling the moment she was told she had cancer, Ivie, from Sittingbourne, Kent, said: ‘Although I didn’t think much about it when I was first diagnosed, all I knew was that I didn’t want to die.

‘The first round of chemotherapy was really awful because it made me sick and I was afraid it would happen again when I got the second dose.’

Ivie was diagnosed with malignant peripheral nerve sheath tumors (MPNSTs) last summer.

The rare cancer, thought to affect only one in 100,000 people, usually grows in the legs but can appear anywhere.

Ivie’s tumor grew from the top of her knee to her thigh, with the bone running through the thigh to the hip.

Last May she first complained of pain in her leg.

Still, her family thought it was either age-related – growing pains are common in pre-puberty children – or fatigue from playing football and netball.

Mum Zoë, 47, became even more concerned when Ivie woke up in the night in pain.

Despite trying, she was told she would not be able to get a GP appointment for more than a month.

Mrs Adams said: “I was queuing at 7am the next morning to show Ivie when she should have been having her induction at her new school.

‘It’s fortunate because after she had an X-ray it turned out that she had bone cancer in her thigh.

“It’s scary to think about what could have happened if she wasn’t seen early.”

Ivie was finally diagnosed in late July, two months after her symptoms began.

Mrs Adams said the call from the doctors was ‘horrific’, as were the ‘hellish months’ Ivie had to endure to get better.

Ivie started chemotherapy in August and lost her hair as a result of the powerful treatment.

Doctors opted to replace Ivie’s femur with an artificial hip and knee, in case the drugs were not fully effective.

Ivie underwent surgery at University College London Hospital in November.

She had to learn to walk again and had extensive physiotherapy to ensure she could bend her knee.

While doctors have ‘raised the alarm’ – meaning she is cancer-free – the student will have to undergo check-ups once a month for the next two years.

She has also undergone genetic testing so that the disease can be further researched and understood.

As Ivie returns to school, the family wants to raise awareness about rare cancers that sometimes have no obvious symptoms, so tumors can be caught early.

Mrs Adams said: “We both want to help people recognize the symptoms of bone cancer and help families who are going through what we went through.

“Ivie is an inspiration and has a great story to tell, helping people like her in the community.” MPNSTs – a type of sarcoma – begin life in the layer of tissue covering the peripheral nerves, known as the nerve sheath.

According to Cancer Research UK, such nerves send messages between the brain, spinal cord and the rest of the body.

About 70 cases are diagnosed in England each year. Patients are usually in their late 40s when they discover they have the disease.

In addition to pain, MPNSTs can cause lumps or swellings in the soft tissue under the skin.

The disease can return despite treatment. It can also spread throughout the body like other cancers.