Doing more than just talking about cancer
HEROS OF THE HEALTH SERVICE:Head and neck cancer (HNC), which includes mouth cancer, kills more people than cervical cancer, malignant melanoma or Hodgkin’s disease. It is the eighth most common cancer worldwide and causes 250,000 deaths a year.
Every year in Ireland an estimated 400 people are diagnosed with the disease and it is responsible for 150 cancer deaths.
The impact of the treatment for advanced HNC is devastating. Patients can lose half their jaw, part of their face and as a result can have immense difficulty in doing things we all take for granted such as speaking, eating and controlling saliva.
There is just a 20 per cent five-year survival rate for people with advanced disease and those who do survive will have hugely complex ongoing oral care needs for life.
However, perhaps the most striking thing about this devastating cancer is that a lot of these deaths and debilitating disfigurements can be prevented if detected early.
Dr Eleanor O’Sullivan, chairwoman of Mouth Head and Neck Cancer Awareness Ireland (MHNCAI) and clinical lecturer in oral surgery at the Cork University Dental School and Hospital in UCC, has taken the lead in Ireland in both caring for HNC patients and getting the message out that early detection saves lives.
O’Sullivan is responsible for establishing Ireland’s annual mouth cancer awareness day which last year saw more than 10,000 people screened nationwide.
According to O’Sullivan, one of the biggest problems with HNC is that most patients present at an advanced stage of the disease when survival rates are poor.
A lack of public awareness of HNC led O’Sullivan and colleagues in UCC, together with the Irish Cancer Society, the Irish Dental Association, the Dental Health Foundation and HNC survivors, to establish MHNCAI in 2009.
The aim of the body is to raise public and professional awareness of HNC, highlight the risk factors, promote early detection and improve quality of life for patients.
One of the group’s early achievements was Ireland’s first mouth cancer awareness day, which took place in 2010 in the Cork and Dublin dental hospitals. Thanks to the sterling work of O’Sullivan and her colleagues, in just one day more than 3,000 patients were screened and six cancers were detected.
In 2011 more than 700 dentists got involved in the event thanks to the co-operation of the IDA, whose members provided free public screening nationwide. This resulted in more than 10,000 people being screened. Mouth Cancer Awareness Day took place on September 19th this year and once again it was a huge success with pharmacists also getting involved.
O’Sullivan explains that smoking and drinking alcohol are major risk factors for HNC with people who drink and smoke to excess being most at risk. She says about half of HNC patients would be classed as heavy drinkers and 11 per cent as alcoholics. However, she says it is important to note that HNC can also affect people who do not smoke or drink and have healthy lifestyles. “Nobody is immune to it, everybody must be aware of the existence of it and of the signs and symptoms and know what to do about it,” she says.
She explains that the symptoms of HNC include mouth ulcers that persist for more than three weeks; white, red or speckled patches in the mouth; any unexplained lumps or bumps, particularly a swelling on one side of the neck; any alteration of the voice and difficulty swallowing. All these should be checked out by a dentist, she says.
The average age of a HNC patient is 61. However, O’Sullivan says the age profile is decreasing and she is seeing an increasing number of patients in their 40s while less than 10 per cent are under 40.
While the reason for the decrease in the age profile of patients is complex and not entirely evident, O’Sullivan says that binge drinking and the fact that people are beginning to drink and smoke at younger ages may be contributing factors.
Low public awareness
According to O’Sullivan, one of the reasons public awareness of HNC is so low is that until recently it was largely not spoken about and HNC does not tend to attract as much public attention as other cancers.
“Head and neck cancer strikes at the very core of the person. [It] makes them very vulnerable, makes them a bit less able to fight for their rights for themselves because of the fact that they may be disfigured, may have difficulty speaking, difficulty controlling saliva, may have a poor voice quality, [or] difficulties making themselves understood .”
A hugely committed dentist, O’Sullivan has dedicated most of her career to date to the care of HNC patients. She is the only dentist in Ireland with an MSc in palliative care and just one of a handful of dentists in Ireland and the UK to specialise in oral supportive care or dental oncology.
“Oral supportive care has a huge amount to contribute to every cancer patient but particularly the head and neck cancer patients because they have such immense needs when they are undergoing the therapy and also after the therapy long-term,” she says.
The impact of HNC treatment on patients’ quality of life is immense. For example, O’Sullivan explains, due to dry mouth or a lack of saliva – a common side effect of treatment – some of her patients are forced to wake up every half an hour at night to take a drink of water.
Dry mouth also results in increased infections and decay and makes it difficult to wear dentures which are essential to eat and speak. “We would have a lot of patients who would have lost a large part of their lower jaw, lost half a tongue. I have patients who will never eat again.”
According to O’Sullivan, roughly three people die in Ireland every week from HNC and this is an “unnecessary death toll because if people present early, the outcomes are really, really good”. “If we can see these cases early, the impact of treatment is extremely minimal and they end up looking very well, having very good oral function, being able to speak, being able to eat. Whereas the impact of the treatment is absolutely devastating if people are diagnosed late,” she added.
The importance of early detection is at the core of the mouth cancer awareness days developed by O’Sullivan. She says she would like to see every healthcare professional in the State trained in how to carry out a head and neck examination. Currently dentists are the only healthcare professionals trained in this area.
She would also like to see investment in public awareness and education campaigns on HNC and the impact of smoking and alcohol, targeted at young people and high-risk groups.
According to O’Sullivan, targeted screening programmes of high-risk groups would be “extremely cost effective” and she is also passionate about the need to improve the quality of life for HNC patients.
O’Sullivan is keen to point out that her work is very much “a team effort” and she pays tribute to colleagues in UCC, the ICS, the IDA, the Irish Pharmacy Union and HNC survivors.
“This is really a major collaborative project. It is people giving their time, their energy completely utterly free and voluntarily . . . anybody who I know that has got involved with head and neck cancer really gets very much absorbed by this and wants to contribute. That is what has made it fantastic for me.”