News and events

21/10/16

What has McDonald's & chordoma got in common? Here's Emma's story from the Evening Standard.

A mother of three today told how a row with her young son about going to McDonald’s led to the discovery that she has a rare incurable cancer. Emma Holloway, 40, had a nine-hour operation at Tooting’s St George’s hospital to remove most of a chordoma tumour that had grown into her spinal cord. It was detected last November after her neck went into spasms during a row with her son Luke, then six, which caused her to fall and break a bone in her foot. When the neck pain continued, her mother paid for a private MRI scan that found a large growth in her spinal cord caused by the bone cancer, which grows out of the skull and spine. Her neurosurgeon, Matthew Crocker, operated safely using a loaned machine that monitors the impact on the spinal cord. There was a risk of his patient being paralysed from the neck down if the surgery went wrong. Mrs Holloway, from New Malden, told her story as she backed an appeal by St George’s Hospital Charity to buy one of the devices, which cost £25,000 to £40,000, for the hospital’s neurosurgery department. Despite her neck being held together by metal plates since the surgery 10 months ago, she is training for February’s Hampton Court half-marathon in aid of the Chordoma UK charity. For Mrs Holloway, mother to Noah, nine, Luke, seven, and Gwen, 16 months, finding she had cancer was like the “sky falling down around your ears”. She said: “You think, ‘Are my children going to remember me? My daughter isn’t going to know me.’ If it wasn’t for Luke, my tumour would have gone undetected for quite some time. He started to have a strop over not being allowed a McDonald’s. I turned and my neck went into excruciating spasms.” She knows the tumour will still regrow, needing further surgery and proton beam therapy, a precision form of radiotherapy not available in the UK. “The risk of paralysis from the neck down was extremely terrifying. Knowing this machine was part of the surgical process helped me to sign the consent forms,” she said. Mr Crocker said the machine was “for when being careful is not enough” as it gave instant feedback if he was damaging the patient’s spinal cord. “You cannot wake the patient during a spinal operation and ask them if they can move their legs.”https://www.justgiving.com/fundraising/emma-hollowayteamchordoma

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There is little funding available for research into this relentless bone cancer mainly because it is relatively rare, occurring in only 1 in 800,000 of the population. Without a focused approach to raising money for research into chordoma, little will change quickly.

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