This was the case for Vix Corbett, 34, whose husband Phil was told he had the condition in early 2014.
“I didn’t really even know what the oesophagus was, let alone oesophageal cancer. I vaguely knew where it was, but not really,” admits Vix.
Louise Collins, a Macmillan nurse, agrees this is often how it goes. “A lot of people aren’t familiar with it. So we’d talk about the gullet, the food pipe - terms people tend to be more familiar with,” she explains. “And unfortunately, people are often presenting late because they - or their GPs - aren’t aware of the symptoms.”
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This perhaps isn’t all that surprising, given that oesophageal cancer is considered uncommon. However, rates have risen considerably over recent years - especially in men (it affects significantly more men than women), and especially in the UK. Plus, it’s very aggressive.
Almost 9,000 new cases were recorded in the UK in 2013, a 43% increase since the late-Seventies. While it’s the 13th most common cancer in the UK overall, it’s the eighth most common in men, and survival rates remain relatively low.
According to Cancer Research UK (CRUK) figures, more than half of those diagnosed will die within a year - survival rate at five years is around 15% overall - and these numbers have barely changed, despite huge improvements being seen across cancers in general.
“We have the highest rates of oesophageal adenocarcinoma [the most common form of the disease] in the world,” says specialist surgeon Tim Underwood, MRC clinician scientist and senior lecturer at University of Southampton. “It tends to present late, and spread early. So two-thirds of the patients we see have already got cancer that’s spread; that’s the reason it’s so difficult to treat.”
It mostly affects people aged 60 and above, though as Underwood points out, “we’re seeing younger people with this disease too”.
For Vix, this is all too real - Phil was just 32 when he was diagnosed.
The news came crashing out of the blue; Phil had always been fit and healthy, the life and soul of the party, and excited to be embarking on a new life phase. He and Vix had been married less than two years and had recently welcomed their son, Zach.
“When we asked about the prognosis early on, we were told it was a bit of a guessing game. They said we were looking at 12 months without treatment, and 18 months to two years with treatment, but that was based on stats that mostly apply to men in their 60s and 70s,” Vix recalls.
There was one blessing for Phil and Vix - through fertility treatment, they were able to have a second child; baby Immy was born last July.
But despite some chemo (surgery is the main treatment, but isn’t always possible), Phil passed away in March this year, almost exactly two years on from his diagnosis.
Vix remembers how Phil had started complaining of difficulty swallowing. “The first time we really thought something was wrong, we were at a friend’s wedding and they had a hog roast. Phil took a bite of his roll and it got lodged halfway down. We thought he was choking and somebody had to whack him on the back. He started avoiding stodgy foods then, but it got gradually worse and worse. Eventually, he couldn’t even keep fluids down,” she recalls.
Difficulty swallowing (dysphagia) is the major symptom for oesophageal cancer. However, by this point, the cancer’s often already quite advanced. Weight loss, vomiting and persistent indigestion and heartburn are also possible warning signs - but these are very common and can also be ‘vague’ symptoms, easy to overlook by both patients, and sometimes even GPs and other healthcare professionals.
TIMING IS CRUCIAL
Research across a number of aspects of oesophageal cancer is currently under way.
For instance, Underwood is collaborating with Dr Rebecca Fitzgerald of the MRC Cancer Cell Unit at Cambridge on a CRUK-funded project, as part of the International Cancer Genome Consortium, which Underwood notes will hopefully aid further understanding of the disease, and “help us tailor treatment more in the future, so we can have specific treatments personalised to an individual person’s cancer”.
Fitzgerald, also a member of the United European Gastroenterology (UEG) Scientific Committee, is leading trials involving the ‘Cytosponge’ - basically a small sponge on a string that can be used to collect cell samples from the oesophagus, to help detect changes. It’s early days, but there’s potential this could lead to a national screening programme, or would at least mean a more effective way of monitoring people with Barrett’s oesophagus, a condition caused by long-term acid reflux - and a known precursor for oesophageal cancer. Currently, endoscopies are relied on, but they’re not as simple, aren’t suitable for everybody, cost more and, crucially, are dependent on a timely and appropriate referral to an expert who knows what they’re looking for.
As Rehan Haidry, consultant gastroenterologist at UCLH and a leading expert on the condition, stresses, Barrett’s does not mean people are destined to get cancer. “It’s an important point to make, because lots of people will Google Barrett’s and think, ‘Oh God, I’m going to get cancer’, but actually, the risk of them progressing to cancer is really, really low,” says Haidry. Official figures suggest one in every 10 with chronic reflux will develop Barrett’s, and then one in every 10-20 of those will develop cancer. It’s difficult to be certain, as it’s now recognised that Barrett’s can also be asymptomatic, however the risk is generally low.
“It’s low, but because it’s not zero, there is guidance that we keep an eye on people with Barrett’s,” adds Haidry. “And we’re now in a position where we can offer early interventions, such as radiofrequency ablation. Ten years ago, if you had Barrett’s and were found to have early cancer cells, you were either offered more surveillance, or you had your oesophagus taken out; a brutal operation.”
Exactly why oesophageal cancer has increased in UK men is unclear. There’s indication that genetic predisposition plays a part, but there’s a lot of focus on lifestyle and environmental factors - particularly as the rise has been so stark over a small space of time - and diet could play a big part. Obesity, smoking and alcohol are also associated with some oesophageal cancers, but these factors don’t explain all cases. What is clear, however, is that more needs to be done to ensure the disease is detected early.
As our experts agree, advancements in testing and treatments are all-important - but unless they are accessed in good time, everybody’s “fighting a bit of a losing battle”, stresses Fitzgerald.
Awareness underpins everything - and this applies to everybody: the general public, GPs and all healthcare professionals who form part of the picture.
“Listen to your body, and don’t ignore things,” says Vix. “If you notice anything unusual - even if you think it’s nothing serious, get things checked.”
:: More information about oesophageal cancer can be found on the Macmillan and Cancer Research UK websites. Unsure whether your heartburn is cause for concern? Guidelines advise that anybody who’s had symptoms for three weeks or more should see their GP, along with those who’ve had acid reflux for a long time, or if symptoms suddenly change. Visit www.heartburncanceruk.org