Professor C René Leemans discusses the Make Sense campaign’s efforts to raise awareness of head and neck cancer and improve outcomes for patients with the disease.
Half as common as lung cancer but twice as common as cervical cancer, head and neck cancer represents a significant global public health burden. If diagnosed early enough, the prognosis for head and neck cancer is good – but too many people present at an advanced stage due to worryingly low levels of awareness of its signs and symptoms.
The European Head & Neck Society (EHNS) is an international non-profit organisation dedicated to promoting the exchange of knowledge in all aspects of head and neck neoplastic diseases and the highest standards of research, education and training, disease prevention, and patient care. A multidisciplinary body, it brings together a range of medical experts and health professionals, from oral and plastic surgeons to imaging specialists, speech therapists, and dieticians, as well as basic scientists and patient organisations.
The EHNS is also the driving force behind the Make Sense campaign, a yearly effort to raise awareness of head and neck cancer and ultimately improve outcomes for patients with the disease. It does this by:
- Educating about disease prevention;
- Driving understanding of the signs and symptoms of the disease; and
- Encouraging earlier presentation, diagnosis and referral.
Health Europa caught up with the president of the EHNS, Professor C René Leemans, to discuss the campaign as it enters its sixth year.
Head and neck cancer is twice as common as cervical cancer in Europe and is similarly linked to HPV – why, then, do you think it has not received the same level of attention?
It is not a disease that is particularly in the spotlight. For one, it is a rare disease – far more so than breast cancer, for instance, which has received much more attention.
Secondly, head and neck cancer has for a long time had a certain kind of stigma attached to it. Historically it has occurred in elderly men, who drink and smoke a lot and have neglected the symptoms for a long time. People have therefore assumed that it is self-inflicted.
This is changing nowadays due to the increased occurrence of head and neck cancers caused by HPV, such as throat cancer. Throat cancer is typically diagnosed in younger people who don’t share the habits of your average head and neck cancer patient.
Nonetheless, the vast majority of head and neck cancer patients are older men, so the stigma remains.
Media interest has increased due to the interest in HPV, but the coverage is usually focused on sexual activity and not the problem we face, which is a patient with a disease that has been developing for ten, 20 years or more.
Finally, the HPV vaccine is given to women to prevent cervical cancer, but it is not registered for the prevention of oropharyngeal cancer, which HPV can also cause. As such, a lot of attention is directed to women and cervical cancer and not to men and head and neck cancer.
Together, these problems combine to create a lower awareness of head and neck cancer among both the general public and the media.
The situation is, however, improving, and hopefully the Make Sense campaign is contributing to that.
What are the key messages of the Make Sense campaign?
The campaign is now in its sixth year. Prior to that, we conducted surveys in Europe to find out what people actually know about the disease, its symptoms and causes – if anything. The results showed that awareness was very poor.
Providing information about the early signs and symptoms of head and neck cancer, which can be vague and easily missed, is therefore one of our key activities. We want to promote the ‘1for3’ way of thinking. If you have any one of the six symptoms of head and neck cancer for more than three weeks, you should seek medical attention.
The symptoms are:
- A sore tongue, non-healing mouth ulcers and/ or red or white patches in the mouth;
- Pain in the throat;
- Persistent hoarseness;
- Difficulty or pain when swallowing;
- A lump in the neck; or
- A blocked nose or bloody discharge from the nose.
We also want to spread the message that, if the patient seeks medical attention and is diagnosed early enough, at a stage when the tumour has not yet metastasised to the neck, we are very well able to treat that patient without many complications. If treated early enough with single modality treatment – either radiation therapy or surgery – there is a very high chance of approximately 80% that the patient can be cured. If caught at a later stage, then even with heavy treatment, we will be unlikely to achieve that success – more like 50%. That is one of the campaign’s key messages: if you think something may be wrong, seek medical attention right away, because the earlier you do, the better your chances.
The patients who have the best chances of survival are those who have access to multidisciplinary working groups, which include surgeons, radiotherapists, oncologists and all the ancillary specialists, as well. In Northern and Western Europe, that is normal practice and we have had such centres for ten, 20 years already. However, in other parts of Europe it is not the case – again, that is something we would like to promote.
We also want to get information out there about the risk factors, which are similar to those for lung cancer and cardiovascular disease. Smoking is of course a real problem, but especially bad is smoking in conjunction with heavy alcohol use, which increases your risk of head and neck cancer fourfold compared to smoking alone.
These are the main messages of our campaign, but we also adopt a different theme every year. Currently we are ‘Supporting Survivorship’. Patients who do survive may continue to have problems as a result of the disease or its treatment, whether psychological or physical, and it’s important to realise that and act upon it.
For those patients that do seek medical advice, what support is available? Are doctors themselves sufficiently aware of and knowledgeable about the symptoms of head and neck cancer to make the correct diagnosis?
That is an important point and a big challenge. It is fair to say that the average GP sees maybe one or two head and neck cancer patients in their career. Coupled with that, the symptoms are vague and so easy to miss. From that perspective, it is hard to blame a GP for not immediately referring a patient to a specialist when they first seek medical attention: if you don’t see the disease often, you may not be very sharp at diagnosing it.
The only thing we can therefore do is try to educate medical professionals, which we are doing by sending out leaflets and initiating contact with European and national GP bodies and societies. It is very difficult – GPs already have so much they have to be aware of; now we are asking them to pay more attention to something else, as well.
Our key message to GPs is: if the patient displays any of the six symptoms for more than three weeks, send them to an ear, nose and throat (ENT), oral or maxillofacial specialist – to anyone who may be able to examine them better than a GP can.
Many organisations have identified cancers with unmet needs that demand more research and investment. Should head and neck cancer be thought of in this way?
That would be a very good way of enabling us to improve patient care and increase access to multidisciplinary teams. To that effect, we co-operate with the European Cancer Patient Coalition and have also attended discussions at the European Parliament with the aim of getting MEPs interested in the cause and engaged with head and neck cancer patients. Via this route, we have also tried to attract the attention of the European Commission itself.
We also try to improve awareness via European Head and Neck Cancer Awareness Week. We regularly devote one day during the week to holding open clinics that patients can go to and be examined in. The referral rate may not be very high, but it attracts the attention of the media, which helps to put the topic more firmly on the health agenda and hopefully brings it to political attention. We hold these clinics in a few cities across Europe.
The Make Sense campaign is now in its sixth year – how has the landscape of head and neck cancer changed since its inception, and what have been its key achievements?
There has certainly been an improvement in awareness – during the yearly awareness week we are approached by national media in almost every country in Europe, which shows that interest is increasing, with thousands of original articles published, and we have distributed countless leaflets, and maintained a regularly updated website in multiple languages. We have come a long way, but there is still a long way to go.
Something I am particularly proud of is the number of patients we have screened – close to 50,000 in more than 800 clinics over the last five years. We are also now allied with many different healthcare professionals and patient advocacy groups, which I think is very important.
We have certainly done some good over the last five or six years, but we cannot let up. We must keep going.
We are very grateful for all our dedicated teams across Europe, and of course to our sponsors: Merck, Bristol-Myers Squibb, and Norgine.
This article appears in issue 5 of Health Europa Quarterly.