One evening after supper, Jamie Thomson, aged 21, in his second year of an accountancy degree at Glasgow university, noticed a lump like a small piece of bread stuck to the roof of his mouth. He tried to pick it off with his tongue but it wouldn't budge. The next day, by chance, he was booked in for a check-up at the dentist, who thought the lump could be "connected with his tonsils", but suggested he might want to get it checked out by his GP, which he did the next day.
One year later, Jamie is glad he took that dentist's advice. His GP sent him off to a consultant at Gartnavel hospital in Glasgow. It took three biopsies to determine that the crumb-like tissue was oral cancer - his tumour was particularly rare. What confirmed the results, says Jamie, was a lump that "popped out in my neck, which was really scary. It was after they had removed that lump, and found that it was malignant, that they realised it must have emanated from the growth in my mouth." He had a nine-hour operation - quite usual for oral cancer surgery - which involved removing all the glands in his neck, as well as the growth on the roof of his mouth. He has a foot-long scar on his arm, where the surgeon removed skin in order to recreate his soft palate, which unfortunately didn't take. His voice is much deeper than it was before surgery, but sounds perfectly normal to anyone who didn't know him before.
In spite of the long post-op struggle - he was fed through his nose for two months, which was "very uncomfortable and dehumanising", is having physiotherapy for his neck and arm, where the tendons were damaged, and will never be as fit as he was - Jamie is one of the lucky ones. He's just been on holiday to Cuba, he's going back to university to finish his degree, and he feels he's changed for the better. "My senses have been elevated, I listen to people more, I'm more considerate." And he's alive.
Oral cancer is as common as cervical cancer - more than 3,800 people a year are diagnosed with oral cancer in the UK and four people die of it every day - but there is far less awareness of it, although it has a higher proportion of deaths per case than breast cancer, and there has been depressingly lit tle improvement in survival rates over the past 30 years. This is mainly because people often don't know they have it until it's well advanced. An ulcer that doesn't heal after two weeks, white or red patches in the mouth, change in the appearance of the tongue, anything in the mouth that feels different - these are the signs, and as they're usually painless and seemingly unimportant, people tend to ignore them.
Indeed, eight out of 10 people, says maxillofacial surgeon Martin Telfer, don't realise that cancer can occur in the mouth at all. Oral cancer is particularly unpleasant because we feel damage in that area far more keenly. "Our face - it's where we are, where we perceive ourselves. And there's very little spare tissue there for reconstruction. But the earlier the diagnosis, the more varied the treatment options are." The journalist John Diamond, who died last March, had a particularly nasty form of the disease, says Telfer: "It was doubly bad luck: a posterior tongue cancer presenting as a neck mass. Because the cancer was so far back in the mouth, it was inaccessible, presented very late and required very complex surgery."
Smoking is the main cause (tobacco or cannabis); so is chewing tobacco or betel nut (the incidence among south Asians is particularly high), and if you drink heavily as well, your risk is doubled. Until recently, oral cancer affected mainly men in their 60s; now, because of changing social habits, people in their 40s - and more women among them - are getting it. And there's also been an alarming increase, especially in Scotland, among young people - a four-fold increase in the under-35s since 1960, says Mike Walton, an Edinburgh art lecturer who leads the Scottish Oral Cancer Action Group and whose son Ben, a psychology student, died of "this medieval disease" in 1995 when he was 22.
Campaigners urge people to get to their dentist, the moment they notice something odd, and they try to educate dentists and to encourage them to carry out soft-tissue screenings as part of the six-monthly check-up. It only takes two minutes, and involves feeling the glands around the neck as well as inspecting the inside of the mouth; there's also a new mouthwash, the OraTest, which stains early, invisible lesions blue, and a new biopsy brush, the Oral CDX, which scrapes off suspicious tissue.
The problem, says dentist Derek Helm, who has referred about 60 people, is that under NHS time strictures even two minutes can seem too long. But, "Ask, and ask again," advises Rosemary Kelly, support liaison sister at Canniesburn Hospital in Glasgow. "Don't be fobbed off. If it's caught early, there's a 95% chance of a cure, but only 10% if it's more advanced." And if you think nicotine chewing gum is a good substitute for tobacco, she warns, think again - it's an irritant to the mouth in the same way. Go for nicotine patches instead.
Smoking and drinking are the number-one risk factors, but not all patients fit the typical picture. Ben Walton didn't smoke and only drank moderately. But like John Diamond, he'd had a very bad bout of glandular fever which, thinks his father, lowered his immune system. He had a mouth ulcer which disappeared, then recurred two years later. Ben wasn't referred to a consultant until the cancer had spread too far to do anything, and he died within a year. The tragedy changed and strengthened the whole family, which includes Ben's younger sister, Gemma, and Ben's mother, the artist Victoria Crowe, who has found her work profoundly affected (her book Painted Images illustrates her personal journey). "You see the realities in life," says Mike Walton. One reality he's adamant about: "Two minutes with the dentist may save your life."
