Teenager whose ‘eating disorder’ was cancer
At just 19, doctors assumed Jemma was too young to have a tumour in her gullet. It almost cost her life
When Jemma Jones returns home from another tiring day as a teaching assistant, she never lets herself complain about her aching feet or hands covered in glitter, glue and paint. She’s aware of how lucky she is to be alive.
Jemma, 23, is the picture of health, but two years ago she became one of the youngest Britons to have oesophageal cancer. her youth meant doctors didn’t consider cancer as a possible diagnosis and even wrongly blamed her dramatic weight loss on an eating disorder.
She went through two years of pain and ill health before she was diagnosed.
‘even now, two years after chemotherapy, I still pinch myself that I am here,’ she says.
her health started to become an issue in February 2010 when one morning she tried to eat her usual cereal with milk, but found it painful to swallow.
‘I kept trying to eat, but every time the food went down, it was agony,’ she says. ‘I thought it was a virus and I was coming down with a sore throat.’
her pain got worse and Jemma, then a curvy 13 st and 5 ft, could barely eat a thing.
‘The food seemed to be getting stuck and I had pain in my upper gullet,’ she says.
her GP diagnosed acid reflux — though Jemma had never suffered with heartburn.
‘he told me to get some overthe- counter antacids and sent me home,’ says Jemma, who was 19 at the time.
Over the next few days she tried the medicines, but they made no difference. ‘Days later I went back to the doctor and told him it still hurt swallowing and it felt as if there was a blockage in my gullet,’ she says.
The doctor told her that she might have a condition called Barrett’s oesophagus. This is where cells at the end of the oesophagus (or gullet) change as a result of exposure to acid damage — this makes the cells more likely to become cancerous.
The symptoms of Barrett’s include a chronic burning in the gullet, nausea or difficulty getting food down. however, sometimes there are no symptoms.
Most people with Barrett’s are undiagnosed because they have no idea just how serious persistent reflux can be and so don’t see a GP.
‘ We are trying to get the manufacturers of acid suppres- sants to put a warning on the packet recommending people see their GP if they use this medicine regularly,’ says Professor Rebecca Fitzgerald, an honorary consultant physician at Addenbrooke’s hospital, Cambridge.
YET it is not just a lack of awareness that holds up diagnosis. Usually it is detected by endoscopy — when a tube with a camera is inserted into the oesophagus via the throat and a biopsy is taken from the oesophageal lining.
however, Professor Fitzgerald says GPs are sometimes unwilling to refer patients for these.
‘ GPs often don’t refer for endoscopy because of the costs involved — it costs the nhS roughly £200,’ she says.
‘heartburn symptoms occur in about 10 per cent of the population and about 5 to 10 per cent of those have Barrett’s.’
Once someone is diagnosed they will be given regular endoscopies to check for cancerous changes. The earlier these are spotted the better. Oesophageal cancer has a low survival rate — only 13 per cent over five years — because it is often picked up at a late stage.
Treatment for Barrett’s is with proton pump inhibitors (PPIs), drugs that reduce the amount of acid made by your stomach lining — but it’s not clear if this can reduce the risk of cancer, says Laurence Lovat, professor of gastroenterology at University College hospitals, London. Jemma’s doctor didn’t send her for an endoscopy or give her any PPIs.
‘he just sent me home saying it “might” be Barrett’s and that was that,’ she says.
Over the next two months, her pain worsened and eating became more difficult.
‘ My mum liquidised food for me or made me soups. even that hurt to eat.’ Jemma lost 5 st in two-and-a-half months, falling to just 7 st.
‘By then, I was in despair,’ she says. ‘I felt no one was listening to me.’
She went back to the GP, but after her dramatic weight loss and protestations that she could not eat, her doctor said he thought she was anorexic or bulimic.
‘I broke down in tears, begging him to believe me that I was seriously ill,’ says Jemma. But instead he referred her for group counselling. ‘I refused to go. I was so angry and upset,’ she says.
Then one night nearly two years after her symptoms began, Jemma woke up gasping for air. ‘I ran, clawing at my throat, to Mum’s bedroom,’ she says. ‘She took one look at me and rushed me to A&e.’
There, doctors performed blood and urine tests and even tests on her heart, but it was not until her fifth day in hospital that doctors took Jemma for an endoscopy and suddenly their tone changed.
Jemma and her mother were taken to a side room by a consultant. There he broke the news he had found a tumour in Jemma’s oesophagus.
‘On one hand, I was terrified,’ says Jemma. ‘But I was so relieved at last someone had listened to me.’ A biopsy confirmed she had a large cancerous tumour blocking her oesophagus.
Why she should have developed cancer — and if she had first had Barrett’s — was a mystery.
‘The biggest risk of cancer of the oesophagus is long-standing acid reflux, obesity and there is a small increase in those who drink alcohol or smoke — there’s also a small familial risk, too,’ says Professor Lovat.
Jemma’s diagnosis came so late because she was, first, a woman and, second, young. Cancer of the oesophagus is more common in men (four men to every woman), says Professor Fitzgerald, though the reasons are not understood.
‘We tend to see it in older people [ average age 70] because, in general, cancer occurs more commonly in older people when more damage to cell DnA occurs.’
NONETHELESS, with her symptoms Jemma’ s cancer should have been picked up sooner. By the time weight loss, pain or swallowing difficulties begin the cancer has often grown so large it has spread beyond the oesophagus and, therefore, can be harder to treat successfully.
Jemma had surgery in May 2012. ‘When I came to, the doctor told me they’d not only removed the tumour, but also 24 lymph nodes and three-quarters of my stomach in case it had spread.
‘I’d been cut open at the front and back and would be scarred for life.’
The surgeon had also removed half of her oesophagus. ‘But within days, even with the pain of the operation, my throat felt better. After months, I could eat again. It was heaven.’
Three years on, Jemma can eat only small portions due to her smaller stomach. She weighs 8½ st.
‘My surgeons told me how lucky I was. normally by the time there is a tumour in the gullet it’s too late,’ she says.
‘When they removed mine, they found ulcers all over the top of it where I’d kept trying to eat and irritating the top of the tumour.
‘ The ulcers were what was causing pain and alerted me to it. Without them, who knows? I could have died with doctors just thinking I had an eating disorder.’
FOR further information, go to www.h-cas.org (Heartbeart Cancer UK).