Why it matters for patients

Head and neck cancer includes any cancer that is found in the head or neck region, including the inside of the mouth and tongue (‘oral cavity’), the throat (‘pharynx’) and the voice box (‘larynx’) and excluding the eyes, brain, ears or esophagus. This type of cancer usually begins in the squamous cells that line the moist, mucosal surfaces inside the head and neck: for example, inside the mouth, nose and throat.

Despite being the 7th most common cancer worldwide, with more than 150 000 new patients diagnosed each year, and each individual tumor being classified as a rare cancer, there is little awareness of this, with patient outcomes remaining poor for those diagnosed in the later stages. However, for those diagnosed in the early stage, there is an 80-90% survival rate.

The Make Sense Campaign aims to raise awareness of head and neck cancer and ultimately improve the outcomes for patients with the disease. In order to achieve this, there needs to be more education surrounding the disease, earlier diagnosis and referral, and an overall improvement in the care of patients. The challenge is to communicate the complexities of head and neck cancers in a space where other cancers have wider recognition and understanding, ensuring better chances of survival.

What ECPC adds

The European Cancer Patient Coalition together with the European Head and Neck Society through its Make Sense campaign  have conducted a survivor survey, assessing the impact of head and neck cancer on the physical, social and professional wellbeing of survivors, and the current availability of support resources. From that, we have created a press release to emphasize about the scale of the impact head and neck cancer has on survivors’ wellbeing and the ongoing effect of the covid-19  pandemic.

With almost 300 participants from 12 different countries, the survey revealed that most survivors have experienced a negative impact on their overall wellbeing. Regarding the emotional wellbeing, respondents identified themselves with a wide range of negative feelings such as the fear of future/recurrence or anxiety;  physical sympthons in areas like speaking or appearance also reported high results; and concerning social and professional impact, more than 30% were pessimistic on that matter. The extent of this impact is magnified in cases where there is limited access to a range of support resources.

The survey was also dedicated to study of the impact that Covid-19 pandemic has had, and according to the results, only 18% of the respondents showed positive replies on this matter.

Results indicated that survivors were fortunate to benefit from an increasingly open culture when it comes to talking about emotional wellbeing, those with easy access to a range of support methods tend to experience less of a negative impact on their wellbeing. Respondents noted friends and family as their main support group,  the importance of the HCP and the wide range of helpful resources available.