News and events

22/04/13

Mail on Sunday article raises awareness

An article was published in the Mail on Sunday today highlighting why Freddie Fitz-Gibbon is running the London Marathon. The article was written by Alice Smellie and you can read it below or on the Mail Online here.

Susan Fitz-Gibbon will be watching the London Marathon with particular pride today. Not only is her son Freddie, 20, among the thousands of competitors, he will also be raising money for a new charity she has just launched – the first for the same relentless and rare cancer of the spine that she suffers from: chordoma.

After being diagnosed with the condition in December 2007, the first thing she did was try to find out more information on the internet – without success. ‘At first I thought I had spelt chordoma incorrectly,’ says Susan, from Richmond, South-West London. ‘Then I realised that there was simply no information available.’

This kind of cancer affects about one in 800,000 people, meaning around 500 Britons are currently living with it. Most GPs will not even come across a case in their career.

‘The cancer originates from notochordal cells, which form the spine in a developing foetus,’ says University College London Cancer Institute pathologist Professor Adrienne Flanagan, who is a world authority on the condition.

‘In about 30 per cent of the population, minuscule numbers of these embryonic cells remain within the spine. It is thought that chordoma develops from these but it is not yet known why.’

The condition causes backache, headaches, neck pain and altered vision – vague symptoms that, added to the rarity of the cancer, makes diagnosis difficult.

Susan, 52, recalls: ‘I was lifting weights at my gym in October 2007 when I suddenly felt an agonising pain. Thinking it was a slipped disc, I later went to see my chiropractor. Three weeks on I was still in pain so I went to my GP. I am for ever grateful that she immediately referred me to a neurosurgeon.’

A series of scans and a biopsy revealed a tumour at the base of Susan’s spine. But it took five weeks for doctors to pinpoint the exact type of cancer.

While she was waiting for news, Susan tried to live a normal life. ‘I continued to work, but I couldn’t stand up for long and I was in agony,’ she recalls.

She and her husband Gerald also had the unenviable task of breaking the news to their three sons – Oliver, Freddie and William, who at the time were aged 16, 14 and ten.

‘Mothers, especially sporty and sociable ones, just don’t get ill. It is the worst thing Gerald and I have ever had to do,’ she adds.

While diagnosing chordoma is difficult, treating it is also tricky. ‘Chordoma has a jelly-like texture so it’s hard to completely remove and even a tiny bit remaining will continue to grow,’ says Prof Flanagan.

‘It is also hard to reach without damaging the spinal cord.’

In January 2008, a team at the Wellington Hospital in North London removed the tumour and a diseased vertebra during a 13-hour operation.

The vertebra was replaced with a titanium cage, fixed with screws to the nearest vertebrae.

Susan went through a course of radiotherapy and spent several months recovering. She also exceeded the expectations of doctors by learning to walk again.

‘The first thing I said to the physio was that I needed to be wearing heels by the time I was 50 in 2010,’ she laughs.

‘It took a year to learn to walk again, while in February last year I was cock-a-hoop when I managed to go skiing with my family.’

Tragically, soon after the family returned home, Susan’s oncologist rang. Regular scans had revealed that the cancer was back at the base of the spine and in a nearby muscle.

Susan had a further five operations to remove the tumours and manage complications, spending three months in hospital.

The cancer returned for a third time at the end of last year, and Susan has just finished another course of radiotherapy. Now, as she awaits her latest scan results, she and Gerald have launched Chordoma UK.

‘I want to raise awareness. Perhaps someone’s diagnosis will be speeded up by reading my story,’ Susan says.

She and Gerald also want to raise funds towards more research. In 2006, Prof Flanagan’s team identified the diagnostic hallmark of chordoma – a gene known as brachyury. Since then, this marker has been found in other cancers, including those of the lung, breast and salivary gland.

‘We already know that silencing the brachyury gene stops the tumour growing – though we don’t know how – so we want to switch it off in chordoma patients,’ says Prof Flanagan.

Susan says: ‘If you look at me you can’t tell that I’m ill at all. But it takes a great deal of effort – through medication, meditation and sheer force of will – to achieve that.’

If Freddie hits the dreaded wall today, he will no doubt be inspired to keep going by his mother’s determination.

Photograph from the article on the Mail Online website.

Archive

“Hoping to keep well and carry on with life as long as possible and enjoy the grandkids.”

Read Mrs S' story

“I feel like I'm learning to walk all over again...”

Read Mr P' story

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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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