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Ben's story - oral cancer, a personal view

by Mike Walton, Founder and Chair of The Ben Walton Trust

We now know that oral cancer in the UK accounts for over 6200 new cases, per year with almost 2000 people dying from the condition annually, that is one individual every five hours. We also know that incidence is increasing in younger men and women.

These are the facts. However, in this article I want to give you a glimpse into a personal journey and of how this disease affected one person, our son Ben Walton, who died at the age of 22 from oral cancer.

I am writing this article in the belief that not only will it create further awareness but that it may also bring about a greater understanding of the need for vigilance, as well as providing some pointers as to how this disease may be tackled. Back in 1994 when Ben first became ill we knew nothing of oral cancer, we had no idea that it could affect young people, the early symptoms, the debilitating nature of it or the vital necessity for rapid detection, diagnosis and treatment. We knew nothing, but learned fast.

Young, healthy and fit

Ben was an honours psychology student at University. He was an accomplished pianist and trombone player, he loved singing and had a great sense of humour, which we think served him well throughout his illness.

He was healthy, fit, did not smoke, drank moderately and had excellent oral hygiene. He had a good diet from early childhood and had a long-term girlfriend so did not fit the stereotype for an oral cancer patient. He had, however, experienced a bad bout of glandular fever two years earlier, and at one point he had a mouth ulcer large enough for his GP to measure and record that subsequently disappeared entirely. However, when the tumour presented, it was in precisely the same site.

The first signs of his illness showed in late summer 1994; he felt run down, had pains in his neck and shoulders (which he attributed to a weekend job) and was bothered with a mouth ulcer on the side of his tongue. He was living away from home when term started, so he attended the university health centre, was given a patent medicine and told to return in two weeks. He was never asked how long he had the ulcer, or alerted to its potential effect. After further visits during October and November when the ulcer and lump was described as 'hard and fungating', he was prescribed antibiotics and referred urgently to an oral and maxillofacial surgeon. At that time an urgent referral could mean up to 16 weeks' wait. Ben, however, saw the surgeon in December, was biopsied and the diagnosis of squamous cell carcinoma of the tongue, at a late stage, was given.

In retrospect he was probably a classic case of late referral, sadly not uncommon with this condition. His pathway was probably, as for many oral cancer patients, one of ups and downs, improvements, periods of relative normality, periods of never being free of pain and, finally, death.

Profound effects

While I am going to tell you a little about the chronology of his treatment and the very nature of this can be morbid and was indeed profoundly affecting to all the family, it was not all gloomy. Along the way we gained much that was positive and had many profoundly moving experiences. Ben also squared so many circles and during his last months took control of his life, grew and took responsibility for his own destiny.

In the hospital where Ben was first admitted, because he had a compromised immune system and lesions in the mouth, they thought he may have had AIDS. This caused great consternation to him and his girlfriend and it meant also because of patient confidentiality that we could not find out what was happening. The only way that we discovered that there was something seriously wrong was when I asked the nurse in charge whether we should stay over the weekend for his first clinic and the nurse burst into tears.

He then returned home principally because our GP alerted us to the fact that if surgery was to be done, there would be a lot of aftercare that would likely require our support.

Ben chose not to have surgery, with the help and advice of the medical team, as it would not cure him and would reduce his ability to communicate. He wanted to be able to talk and sing as long as possible, which he did.

He did have some radiotherapy and our Christmas was spent having a face mask made and waiting for treatment to begin after the festive season. As we later realised, information has to be carefully controlled and had we known then what we were later to come to know, I believe that it would have affected our ability as a family to handle the situation in the way we did.

Progression and regression

After treatment there was remission for around two months, time for three generations of the male part of the family to have a memorable golfing break. Then a return to university, back for his mother's 50th birthday celebrations, when it was obvious that his condition was worsening. He was further biopsied and confirmed that it was bad news and that he was in a terminal situation. He was in hospital at that time and spontaneously as a group, several young nurses came to him, hugged him and wept. He came away saying that it was one of the most important things that had happened to him as it showed that people really cared. He then went into a hospice which, although excellent in very many ways, did not really understand his dietary needs as an oral cancer patient or the needs of a young person in a terminal situation. The nursing was very professional but showed none of the emotion of the previous hospital. It did, indeed, at that time appear that Ben would not come out of the hospice and was deteriorating fast. However, the human mind and body are remarkable and after a particularly vivid dream his whole immune system seemed boosted. This process, now called psychoneuroimmunology, where much is done to encourage the immune system through positive thinking, visualisation and relaxation, has produced some interesting and positive results in trials with cancer patients.

The process of improvement was so marked that Ben went off again to university, determined to see his girlfriend's graduation. His life at that time was much compromised, his speech was affected, all food was liquidised, and steroids affected his body image. It seemed like each day he was pushing a boulder up a mountain and starting at the bottom again the next day. Critically he was doing what he wanted to do, but pain and unexpected changes in the mouth were a constant worry.

The end came very suddenly, almost exactly a year after his first diagnosis. We had gone to collect him for Christmas and stayed overnight in a hotel. We had spoken earlier and Ben said he was looking forward to coming to stay. This was not to be. The telephone rang in the early hours of a very cold and snowy night to say that he was in hospital as an emergency and to come immediately. He had been haemorrhaging for some time. The nursing team, probably flouting all the rules, allowed us to be by his bedside as long as possible. He had to have an emergency tracheotomy, but died before further surgery could stem the bleeding.

"Something should be done about it"

Ben had always been amazed and horrified that something so little known, that starts so seemingly innocuously as a simple mouth ulcer, can go on, within the space of a year, to kill. He was very insistent that "something should be done about it".

After our son died we set up The Ben Walton Trust, as a response to the way he had tackled and faced up to this disease. The Trust is an independent recognised Scottish Charity, which works both nationally in internationally to pursue the aims of:

We initially did as much finding out about the disease as possible, reading and writing letters to anyone that could give us useful information. All were very helpful and supportive. We kept hearing anecdotally about more and more young cases and as, at that time, oral cancer was very much thought of as a disease that principally affected late middle-aged heavy drinkers and smokers we felt that there was a real increase that the traditional risk factors could not entirely explain. It was, however, very difficult to source hard statistics, many of which were recorded in varying forms. Data capture has significantly improved since that time. It has now finally been recognised that 'oral cancer can occur in either gender at any age'.

Getting to grips with the causes

Coming to the disease as a lay person also gave a perhaps more objective view of the problems that exist around the disease, the variation in resources and specialised treatment throughout the country and poor professional and public knowledge of the disease. It appeared that late self-referral, delay in diagnosis and onward referral to a centre with expertise in treatment were not uncommon.

Knowing the signs, that while most mouth conditions are not cancer, red, white or mixed patches in the mouth, oral lumps that grow and persistent ulcers that do not clear within two weeks should be viewed as suspicious.

The Trust has a particular interest in when the disease occurs in the under-45-year-olds, and why. We have helped to fund a project at King's College, London, under Professor Saman Warnakulasuiya, for almost five years. It has turned out to be the largest epidemiological study of its kind. The results have recently been presented and while three-quarters of the cases were attributable to the known risk factors of smoking and excess alcohol, a significant 25 per cent of sufferers had not been exposed to any known risk factors and were younger patients.

Other factors which emerged as significant in this group were a previous diagnosis of a mouth condition prior to cancer diagnosis; oral lichen planus, oral thrush, glandular fever or any sexually transmitted disease, for example. There was also a difference in the social class affected by mouth cancer with a high proportion in classes I and II.

Continuous monitoring and early detection

All this argues a case for continuous monitoring and follow up of these conditions and any history of changes in the mouth. The term 'mouth cancer' rather than 'oral cancer' is by general agreement coming into common usage as it is better understood by the general public.

Professor Warnakulasuiya has said: "It is clear from this study that we cannot stereotype who may be at risk from mouth cancer. Young and old, smokers and non-smokers, drinkers and non-drinkers and any social class may be affected. This is important information for dentists and physicians (and pharmacists) so as not to overlook signs and symptoms in the absence of stereotype to avoid misdiagnosis".

I personally believe that early detection is probably the single most important factor. However 'gold standard' the treatment plans are and however good the 'centres of excellence' become, the fact remains that until the patient presents, the pathway of detection, diagnosis and treatment cannot begin and precious time is lost.

As dentists and members of the dental team you all have a critical part to play in identifying conditions that may be pre-cancerous, or cancerous lesions as part of a full regular examination of the mouth, for all ages, and rapid onward referral in cases of concern. It is also important that referral pathways are clear and consistent and lines are maintained with that next stage. Also, you have an important role in encouraging patients to have appropriate regular dental checks, the adoption of healthy diet and lifestyles and alcohol and tobacco reduction/cessation. I wish you well in this, for I am personally convinced that with increased awareness and an improved understanding of mouth cancer the spotlight will turn, be given a clearer focus and result in many of the improvements that we all desire.

Postscript

While writing this article the telephone rings late at night and a young man from the north of England is speaking. He has just read an article on mouth cancer that has worried him, and slowly his story comes out; he has over the last three months been to his doctor and dentist and there is a suggestion that his mouth condition may be malignant, so he has been referred to a hospital but is still waiting for an appointment.

You may imagine my concerns and my advice.

This article originally appeared in 'Word of Mouth 2003- dental health and practice', the publication of the British Dental Health Foundation.

Further information

Contact The Ben Walton Trust at info@benwaltontrust.org

See also Vinod Joshi's Mouth Cancer Foundation

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