Mouthing Off About A Silent Killer

15th November 2008

Cases of mouth cancer in the UK have risen by 17% since 2004, yet we know little about this life-threatening illness. Hannah Patterson investigates.

Every five hours someone in the UK dies from mouth cancer. It kills one in two people diagnosed due to late detection, and claims more lives per number of cases than breast cancer, cervical cancer or skin melanoma, according to the Mouth Cancer Foundation. While huge publicity campaigns have focused on the importance of self-examination of breasts and testicles, little is known about how we might diagnose mouth cancer, how a seemingly harmless but persistent ulcer may be more sinister, as might be a constantly hoarse throat, an unexplained loosening of teeth or even persistently bleeding gums.

In fact, one in five people is unaware of mouth cancer, according to the British Dental Health Foundation, which is organising this year’s Mouth Cancer Action Week (16 to 22 November). Health professionals agree that early detection increases the patient’s chance of survival, in some cases by as much as 90%.
Symptoms such as mouth ulcers, loose teeth, a cough or hoarseness are common, and may therefore be be ignored or treated inappropriately for too long by doctors or dentists, explains Dr Vinod Joshi, founder of the Mouth Cancer Foundation.

“In its very early stages, mouth cancer can be almost invisible, making it easy to ignore, and so often it is diagnosed late,” he says, adding that only 50% of patients survive for five years following diagnosis, because of late detection. “Because of the advanced stage at presentation, many patients succumb to the disease in the first two years following treatment. Earlier detection will increase chances of survival.”

Dr Nigel Carter, chief executive of the British Dental Health Foundation, explains that smoking is the most common cause of mouth cancer “but alcohol is almost as dangerous – and the two together increase your risk by up to 30 times.”

Don’t be complacent, though: some 25% of people who develop mouth cancer don’t have any associated risk factors, so no-one is immune. However, Dr Joshi stresses: “Mouth cancer is largely a lifestyle disease. People who stop using tobacco, even after many years of use, can greatly reduce their risk of all smoking related illnesses, including mouth cancer.”

Cancer can occur in any part of the mouth, tongue, lips, throat, salivary glands, pharynx, larynx, sinus and other sites located in the head and neck area. In the UK, there were 7,697 new cases reported in 2004 and 2,718 deaths in 2005. The incidence in younger people is also increasing.

The level of ignorance about this form of cancer is worrying. A survey carried out last year showed that 27% of people believed spicy food to be a main risk factor (which it isn’t), 16% wrongly thought hot drinks could cause mouth cancer, while another 15% thought kissing could bring it on.

To increase awareness this year, posters will be displayed in thousands of doctors’ surgeries and dental practices in the UK to make sure people check their mouths regularly. The British Dental Health Foundation will also be sending ‘blue ribbon’ collection boxes out to pharmacies, health clinics and surgeries nationwide, for Mouth Cancer Action Week 2008, to raise funds to continue the awareness campaign.

The message is: If in doubt, get checked out. Visit your dentist, doctor or pharmacist.

Symptoms

:: A sore or ulcer in the mouth that does not heal within three weeks
:: A lump or overgrowth of tissue anywhere in the mouth
:: A white or red patch on the gums, tongue or lining of the mouth
:: Difficulty in swallowing, chewing or moving the jaw or tongue
:: Numbness of the tongue or other area of the mouth
:: A feeling that something is caught in the throat
:: Chronic sore throat or hoarseness that persists more than six weeks
:: Swelling of the jaw that causes dentures to fit poorly or become uncomfortable
:: Neck swelling present for more than three weeks
:: Unexplained loosening of teeth persisting for more than three weeks

Natascha’s Story

When civil servant Dieter Hummelsiep developed a persistent ache in his shoulder, no one could have imagined the outcome.

His daughter, Natascha Nelson, 31, a PA at the Tate in London, recalls: “He lived in Germany, so I wasn’t with him through the whole process, but after a number of tests on his shoulder, in a matter of a few weeks it had been diagnosed as cancer in the lower jaw area. Pretty soon after that he was having a major operation. Three times he was treated for it and he thought it was gone, but it just kept coming back. It finally developed in an area which was right on the windpipe, so it couldn’t be treated.”

Two years after being diagnosed, Dieter died, aged 59.

Within that time his quality of life was mixed. Mostly he couldn’t work. He had 15 operations under full anaesthetic. He had radiotherapy and chemotherapy; part of his jaw and tongue were taken away. His teeth fell out. He had a skin graft from his chest to cover skin taken from the neck area.

Dieter and his wife Karin loved to travel and during the periods when he was well, took trips to Venice, but his health was up and down. Despite his good spirits, when Natascha, who lives in Kilburn, flew over to see him, she could see changes. “He was very much one for putting on a brave face if possible, but I know that it did get him down. I could see that he was very tired. He’d go to bed at eight o’clock in the evening and couldn’t eat very well because of the surgery. Obviously he was disfigured from it as well.”

Natascha reflects that her father made the most of the time he had left. “He’d always wanted a particular car, a Mercedes. There had been lots of talk about, ‘Can we? Can’t we?’… He bought his car and it was his pride and joy. Whenever he could he drove himself to hospital appointments because he just loved that car.”

As his condition deteriorated, though, Dieter was unable to drive – or to talk, and had to write everything down.

When Natascha visited him in a hospice during his last days, she knew that he was ready to say goodbye. “He couldn’t speak as he’d had so many operations, and so many bits taken off him that I knew he’d just had enough.” She spent time with him playing board games from her childhood, although he would fall asleep in between turns. He whiled away the time on the balcony and his family took him for walks in the gardens in his wheelchair. The day Natascha flew back to the UK he died in the night.

Dieter had been a heavy smoker throughout his adult life, which doctors said was a contributory factor. Natascha herself smoked at the time, ”but it made me think twice. Soon after I saw how the cancer had affected him I gave up.”

She is fully behind the campaign to raise the profile of this silent killer. “There are so many cancers out there which you never think would exist. People should be made more aware of mouth cancer. When people talk about smoking in particular, they focus on lung cancer and heart disease.” As Natascha knows only too well now, there’s more to it than that: “The dentist’s check isn’t just for your teeth.”

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