[ Words: Tim Power ]
Oral cancer is one of the fastest growing cancers in the UK. In the last 20 years, the diagnosis of this type of cancer, which affects the mouth and throat, has jumped 135 per cent, with 2,722 people losing their lives to the disease last year. These are the disturbing statistics from the State of Mouth Cancer Report 2018/19 published by the Oral Health Foundation last November during Mouth Cancer Action Month.
According to this survey, while almost nine in 10 (88 per cent) adults in Britain have heard of mouth cancer, only 8 per cent are confident about their knowledge of the disease. More concerning is that three in four (75 per cent) do not know the major signs and symptoms for mouth cancer.
That’s why the vigilance of dentists and their knowledge of oral cancer symptoms during routine inspections of their patients is vital to spot the disease early and improve the life expectations of people.
Early detection of oral cancer increases the chances of survival from 50 per cent to 90 per cent. Depending on where the cancer strikes, the one year survival rate for mouth cancer is between 60 per cent and 83 per cent. This drops to between 19 per cent and 58 per cent after 10 years.
Ireland’s Dental magazine spoke to three people who, to some degree, owe their lives to their dentists who either correctly identified oral cancer, or whose doubts led them to ask their patents to get a second opinion. Thanks to their dentists’ intervention, and to the skills and dedication of the many medical professionals who were involved in their treatment and subsequent recovery, Peter, Susan and Alex are now living healthy and fulfilling lives once more. Here are their stories.
If Alex Geater’s regular dentist had not gone on holiday in April 2016, Alex believes he would not be alive today. The retired engineer, now 79, had been seeing his dentist to get new dentures fitted but had to go back several times over a period of a couple of weeks because they were still uncomfortable. When the dentist went on holiday a colleague took over Alex’s treatment, but after a routine examination of his mouth the new dentist was concerned with what she saw.
Alex explained: “The new dentist said: ‘I think we might have a problem here’ and excused himself to make a phone call. And the next day I was asked to go to the Dental Unit of Monklands Hospital to get a biopsy.”
“I’m here thanks to the vigilance of a new dentist”Alex geater
The dentist had spotted small ulcers underneath Alex’s tongue and had suspected cancer – a prognosis that was confirmed a few weeks later by specialist head and neck cancer consultant after a number of tests, CT scans and X-rays.
Alex said: “I thought something was up because of the speed I was asked to go back to hospital for repeated tests. When they confirmed it was cancer I was shaking. However, they were very good with me, explaining all the options they could take to tackle the cancer and in a language I could understand.
“They described the pros and cons of three options: chemotherapy, radiotherapy and surgery. So, after a chat with my wife Eleanor, who was a former nurse, I decided on surgery because I wanted the cancer out of me.”
However, the surgery was not a simple operation of just removing the part of Alex’s tongue affected by the cancer. It was a particularly invasive procedure: it involved accessing the lower part of his tongue through the right hand side of his neck, removing some of his shoulder muscle to gain access and taking a skin graft and artery from his arm to replace the part of the tongue that had to be cut away. Skin was also taken from his stomach to replace the material removed from his arm. The operation took 11 hours and he was told that a vast number of people were involved in preparing and conducting the surgery as well as those involved in his subsequent recovery.
Alex said: “I went into hospital on 10 May 2016, three days before the surgery, and one day I remember waking up and feeling odd. So I mentioned this to the nurse to see if I should go through with the operation and she laughed and said I had the surgery the day before. It was amazing, as I did not feel a thing.”
After four weeks, Alex was able to return home but, as his mouth and neck needed to recover, he had to be fed a liquid supplement through a tube inserted through his nose for the next four weeks.
While the operation was successful there were physical consequences that Alex is still learning to get used to. A big change is the loss of his salivary glands and not being able to move his tongue.
He said: “I don’t go anywhere without my artificial saliva spray which helps to hydrate my mouth. Also, as my tongue is effectively fixed to the bottom of my mouth I can’t move it around, which makes chewing food and moving it around my mouth very difficult, which makes mealtimes a problem.
“However my wife is wonderful and blends all my food for me and also my pharmacist has helped by procuring liquid forms of all my medication.”
Alex is now attending the Glasgow Dental Hospital to get dentures fitted, as his jawbone was slightly offset during the surgery, and is looking forward to chewing again.
Looking back on the experience, Alex said he is full of admiration for the way all the medical professionals worked together with such speed to find out what the problem was, deal with the cancer and have also continued to support him in his recovery.
This inspired him to get involved with Macmillan Cancer Support Lanarkshire and to use his experiences to help others. He is now a qualified advisor based at Bellshill Library where the charity holds a drop-in service.
He’s also been involved in setting up a local support group at the Maggie’s Centre, alongside Monklands Hospital.
He said: “Before this happened to me I had never heard of ‘head and neck’ cancer so I asked the Macmillan head and neck clinical nurse specialist and my speech therapy nurse, who were was supporting me through my recovery, if I could meet someone else who had the same sort of operation. She set up a meeting between Eleanor and myself with another couple, and we had a brilliant afternoon taking about our experiences. We decided to meet monthly and since then other people have joined us; the last time we met we had 36 people in the room.
“It’s a great forum to discuss issues and after I told them about how I deal with ‘dry mouth’ issue with my artificial saliva spray no one has that problem any more. We’ve even discussed the best way to prepare and eat food without it getting stuck to the top of our mouths.”
He added: “I’m thankful that my regular dentist went on holiday when he did, but I’m also angry with him for not spotting the signs of cancer when I had seen him for repeated visits over those two weeks. The reason I’m here and supporting others with cancer is thanks to the vigilance of his colleague.”
Imagine a life without the pleasures of chocolate, cakes, biscuits and red wine. This is the reality for Susan Bookless, 60, who underwent a series of chemotherapy and radiotherapy treatments after she was diagnosed with oral cancer in 2017.
The treatment not only “fried” her saliva glands, giving her a constant dry mouth, but also changed her taste buds.
The retired businesswoman from Biggar explained: “My taste buds have not gone back to normal after the treatment for cancer. I used to absolutely adore chocolate but now it tastes utterly vile, the same with red wine. As I can’t produce saliva there are a lot of foods that just don’t suit me now like biscuits, crackers or cake, and it means that I have to drink a lot of water during the day and with my meals. Strangely, whisky still tastes nice!”
“Now I would never have known that I had cancer”
Susan’s experience started in late 2017 when she felt a lump in her neck. This was at the same time as she was having root canal treatment and having a crown fitted on her back tooth so she thought there might be some infection from the treatment. She mentioned this to her dentist who took an X-ray of the area but could not see anything unusual. The dentist thought the issue would probably resolve itself, but also advised Susan to go to her GP to get it checked out.
As the lump was still there a couple of weeks later, Susan went to see her GP who, although he was not unduly concerned, referred her to local hospital for an ultrasound scan just to check.
She said: “I thought it was possibly an infection or my glands were swollen because of a cold, but it wasn’t sore or uncomfortable at all. However, when the radiologist said to me that my GP would have the results of the scan tomorrow, I thought ‘oh dear, that’s a bit quick’.
“That was the Thursday and on the Friday evening my doctor phoned to say that there was an issue.
“I knew when I was having the scan that they had found something so from that moment onwards I really think I knew what it was. Like most people, I Googled everything I could find about throat cancer symptoms, so I was quite prepared for it.”
Susan was sent to Monklands Hospital where an ENT consultant used a camera to examine the inside of her throat and also did a needle biopsy, which was processed in half an hour.
Although the needle biopsy showed that Susan had cancer, the consultant wanted to take a ‘belt and braces’ approach and put her under a general anaesthetic to take a full biopsy. This confirmed that she had oropharyngeal cancer under the back of her tongue on the right hand side and that this had spread to her lymph glands on the same side – the lump that Susan had originally felt.
“At the time, I was totally prepared to hear that it was cancer. I just thought: it is what it is and I’ve got to get through it. I was more concerned about my husband and about telling my children and elderly parents. It was a shock to my husband as I’d only mentioned my suspicions to him the previous evening. Over the next two or three weeks, I did have a few meltdowns but that was just because of the enormity of the news.”
After further scans and consultations with an ENT consultant and an oncologist at the Royal Infirmary in Glasgow, Susan was referred to a Macmillan nurse who explained what the treatment would be over the six weeks of radiotherapy and two rounds of chemotherapy, which was to start in December 2017.
“The Macmillan nurse that was assigned to me was absolutely fantastic. She was a head and neck specialist so she knew exactly what I was going to go through and was there to give advice and support.
“The radiotherapy ended on 19 January. For the first couple of weeks of treatment, I felt fine but then, just as the Macmillan nurse had told me,
I began to feel very poorly and my throat started to burn. By Christmas, I could not swallow and on Boxing Day I had to have a feeding tube inserted up my nose and down into my stomach, which is how I had to ‘eat’ for the next six months.
“During this time I was very sore and tired and really pretty nauseous. I had a sick bowl in every room in the house and even in the car.”
Despite these experiences Susan says she now feels absolutely fine. She said: “There’s no doubt about it, it is a brutal and horrific experience
and it took about a year out of my life, but you soon forget it and you get back to some sort of normality.
“Today I feel absolutely great and, if it was not for the dry mouth, I would have never have known that I had cancer.”
Last November, Susan joined Alex Geater as one of the many people who attended the Scottish Parliament to support the British Dental Association Scotland action plan to combat oral cancers and also highlight that the government’s plans to extend the gap between dental appointments to beyond 12 months could jeopardise efforts to tackle Scotland’s fastest growing cancers.
Peter Young was devastated after hearing he had been diagnosed with oral cancer, but the strong relationships he made with the medical professionals who were responsible for his treatment helped him to overcome one of the greatest shocks of his life.
After an international career in logistics, Peter had returned to Scotland to settle down with his family, but that plan was soon shattered after a routine visit to his dentist in Glasgow.
He explained: “I went to my dentist to get a tooth taken out two days before I was going on holiday but during her examination she said to me: ‘There’s something not right here – I’m going to refer you to the Dental Hospital’.
“I was not unduly concerned, but the next day the hospital called me and asked me to come in. As I was away for a week I met the dentist the following Monday and after a further examination she said there was something hidden under the back of my tongue that she was concerned about, and she referred me to the Head and Neck Department at the Queen Elizabeth University Hospital.”
The H&N consultant agreed that it needed further examination, and after two weeks of tests, scans and MRIs the consultant told Peter he was 99 per cent sure it was cancer, and the way forward was radical surgery.
Peter said: “I felt devastated. I did not know what radical surgery meant: radical was, as far as I was concerned, when I joined the CND (Campaign for Nuclear Disarmament)! My surgeon sat with me for an hour two weeks before the operation so we could discuss things and then asked me to sign the consent form. He also had the honesty to ask me to sign a second consent form because something could go wrong with the first operation and he did not want to bother my wife for further consent – and, sure enough, something went wrong.”
The surgery involved a tracheostomy and a selective neck dissection where they split Peter’s jawbone to get access to the cancer at the back of his throat. This also involved removing his teeth and taking skin and a vein from his forearm to graft onto the area at the back of his mouth where the cancer had been removed. After 11 hours of surgery, which ended with his jaw bone being fixed back in position, it should have been a case of slow recovery, but another operation was required to clean out the neck dissection. Also, the skin graft removed from this arm became infected.
“The whole medical treatment was extraordinary”
Peter said he was shocked when he looked in the mirror for the first time after the surgery: “I looked like I’d been in a car crash. They had split me half way down my chin and took half that jaw bone away and then reconstructed it all, but they had done such a good job that my face eventually became symmetrical. I came out looking better than I went in.
“The whole medical teamwork was extraordinary. There were lots of people from the consultant, surgeons and nurses right down to the speech therapist who taught me how to speak again. They were so professional and caring, which I think is a rare combination.”
After three and a half weeks in hospital Peter returned home. While he was physically recovering well he was mentally shattered by the experience and this affected his behaviour.
He explained: “My consultant said that my life would change from this moment onwards but I did not believe him. But it did change and he was right because all of a sudden you realise that you are mortal – and that is a difficult thing to accept.
“When I got the diagnosed I found the whole thing very distressing. The biggest reaction that you have is mental. The physical pain you experience is nothing compared with what goes on in your head. I think you go into a survival mode so I strongly felt I was going to live, whatever happens.
“The problem starts when you go home and you take it out on the people that you love; you become very short-tempered and very selfish. It took me about a year to realise what I had become and apologise to my wife. She says I’m much nicer now!”
Peter was able to get support and advice from his consultant who he saw every six weeks, and particularly from the senior nurse at the Queen Elizabeth University Hospital where he went regularly for checks on the infection on his arm.
He said: “This senior nurse’s father had gone through the same cancer as me so she insisted on treating me herself and checking up on me and making sure I was dealing with the experience. That regular interaction with her helped me get back on the right path – she was like my psychologist.”
Although Peter went back to work, after a year he was due to take retirement. He said: “I just wanted to get back into normality and into a rhythm, but after a trauma like this your confidence goes – your mind does funny things.”
He is not idle in retirement, and he is using his own experience of surviving cancer to help others as he has trained as a Macmillan Cancer Support adviser.
He said: “I do a bit of work for Macmillan on counselling people at a library. You can visibly see the relief in people’s faces when they realise that you have been through the same experience as them and that you know what you are talking about – it creates immediate empathy.”
He added: “The consultant said I was fortunate that they found the cancer early on as I had a 90 per cent chance of survival to live more than five years. I was discharged from hospital on 14 August 2015 so it’s coming up for four years now, so I’ll never forget my dentist for spotting something and having the sense to refer me on.”
Joanna May, 42, from near Newry in Northern Ireland, knows what a mouth ulcer feels like. That’s why she was concerned when she believed that the persistent stinging sensation on her tongue she experienced back in 2012 was not due to an ulcer. She confided in her dentist during a regular check-up and the practitioner immediately referred her to the maxillofacial department of Ulster Hospital at Dundonald, on the outskirts of Belfast. This was the start of four years of regular check-ups that eventually resulted in an operation to remove precancerous cells from her tongue.
Joanna said: “It all started about four years ago when I hurt my shoulder. I was prescribed anti-inflammatories, but I took a severe allergic reaction and my tongue swelled up.
“After that, I began to notice a stinging sensation in my tongue. I mentioned it to my dentist who could see white spots on the underside of the left hand side of my tongue. She wasn’t sure what it was and so she referred me to the hospital where I got an appointment immediately as they considered me a priority case.
“I was very nervous because I knew that people had died of mouth cancer, so I really wanted to know what it was.”
This worry was exacerbated by Joanna’s existing post-traumatic stress disorder (PTSD), caused by a significant experience in her past, which meant she was prone to periods of high anxiety.
“I’m fortunate that my condition was caught early”
Luckily, the biopsy on her tongue diagnosed oral epithelial dysplasia, an abnormal development of cells that is in a pre-cancerous state. This meant that the condition, at that time, was low risk but would have to be monitored on a regular basis.
She said: “This condition is common with people who smoke or drink alcohol, or a combination of both, although I’ve never smoked and I drank very little. I’m just unlucky that my DNA had been kick-started into misbehaving.”
Unfortunately, in October 2016, after a high-risk grade of oral epithelial dysplasia was detected during her regular check-ups an operation was planned for December. However, it was not the potential for developing cancer that terrified Joanna, it was the operation itself.
She explained: “The consultant decided it was time to perform a partial glossectomy, or the removal of part of the tongue. Strangely, I was more anxious about the anaesthetic than the worry of cancer. I’ve broken bones before, including my leg, but I’ve never been under anaesthetic.
I was really worried about the risks of the anaesthetic and of not waking up. This anxiety comes from my PTSD, so I was terrified. I have to say the operation was the most stressful thing I have ever gone through in my life.”
Despite her fears, the operation went well with only a small amount of material removed from the underside of her tongue. However, because of her heightened anxiety, Joanna was desperate to get home after the operation and not rest overnight in hospital, as recommended by the surgeon. She regrets not taking this advice, as when she got home, she was in such a stressed condition that she was unable to take the soluble medication she was given to reduce the pain she was experiencing and had to be taken to the A&E department of her local hospital by her fiancé for treatment.
She said: “My parents and fiancé were wonderful. They looked after me like a tag team, taking shifts to support me through the experience and helping me at home with my painkillers and liquid food while my tongue recovered.
“I was also relieved that the surgeon said he was pleased with the operation, as this made me feel a lot more confident about the future. After a couple of weeks, I was able to eat soft solid foods and by the end of January 2017, I was back to work. The only way the operation has affected me is that there are now parts of my mouth that I can’t reach with my tongue, but that is a small price to pay.”
Another change to Joanna’s lifestyle was her decision to give up alcohol, and she’s been teetotal for the last two years. She said: “I was only a social drinker before but I decided there is no point in increasing the risk of getting cancer again. I even have a photo on my phone of my last alcoholic drink on 12 September 2016. I don’t mind not drinking at all, in fact I feel great.
“My six-monthly check-ups have been good so far too, and the whole experience has certainly made me focus more on my oral hygiene, with regular teeth brushing and flossing. I’ve even started wearing my bite guard at night to protect my teeth as I grind them in my sleep because of my anxiety. I’ve never liked to wear the bite guard as it was uncomfortable, but now I do everything I can to look after my oral health.
“I’m lucky that my dentist listened to me when I told her that I was concerned about my tongue and fortunate that my condition was caught early. So now I tell everyone I meet to make sure they go for their six-monthly dental check-ups.
“And, if you have what look like mouth ulcers for more than three weeks get them looked at. If you have any worries about anything you think is unusual, see your doctor.”