Head and neck cancer – Frequently asked questions

Cancer Heroes, a support group for head and neck cancer (HNC) patients and their families, inform us of the common questions that are asked by patients.

What is HNC?

HNC is a grouping of regional cancer incidents collectively known as head and neck cancer. They most commonly start with abnormal and uncontrolled growth of the squamous cells that line the mucosal surfaces of the head and neck area, like your mouth, throat, and voice box. They can also start in the salivary or parotid glands, sinus cavities, muscles, nerves and jaws in the head and neck region. It’s interesting that brain cancer isn’t regarded as a HNC.

Why did I get HNC?

The truth is it’s very difficult to say as we are all so different, from our environments, lifestyles, upbringings and genetics. What we do know is that there are factors that may increase your risk. These include tobacco and alcohol usage (particularly in combination), human papillomavirus (HPV), Epstein-Barr virus (EBV), bad oral and dental hygiene, chronic intraoral trauma, gastroesophageal- and laryngopharyngeal reflux disease.

What can I expect on this journey?

You will be flooded with a myriad of emotions and this often results in instant tears and fears. Everyone, including family and friends, should allow themselves to process these emotions during this early period of diagnosis and seek assistance from an experienced therapist. Ask your doctor for a referral. 

Cancer treatment is most successful when undertaken early in the disease process, therefore as soon after diagnosis as possible, so management of emotions and starting the journey with this support is preferable.  

If you ask most cancer patients what they remember of the day of diagnosis, they will say it’s all a haze. This is normal and the very a reason why Cancer Heroes was formed, to assist patients to come to terms with the diagnosis, but, more importantly, assist them with the next step which is the therapy process.

What is the best therapy?

This all depends on what type and stage of cancer you have. A multi-disciplinary team (MDT) meeting should be held, where all options are considered and the most appropriate course of care is established for you. Members of the team include head and neck surgeons, radiation and medical oncologists, reconstructive and plastic surgeons, maxillofacial surgeons and prosthodontists, oral hygienists, radiologists, pathologists, nuclear physicians, ICU physicians, anaesthesiologists, dietitians, speech and swallow therapists, palliative care physicians and psychologists.

Treatment options will most likely include surgery, radiation and/or chemotherapy. While surgery is often the management of choice, multi-modal therapy is often prescribed dependent on the type and extent of the tumour. In some cases, it’s too difficult or dangerous to cut the cancer out and thus you will hear the term inoperable. This then leads to chemotherapy, radiation, immunotherapy, or a combination thereof.

It’s important that the MDT gives you feedback on all the options and that you understand the side effects of each option.

What side effects can I expect?

All treatment will have some extent of side effects, some of which can be permanent. Everyone is different so will experience a different range and extent. These side effects should be explained carefully to you and you should be guided on the best strategies for their management. The most useful management strategies to you may not come from your doctor, but from experienced therapists, nurses and fellow survivors in a support group, but should always be undertaken with the knowledge and discussion with your doctor. 

Plastic and reconstructive surgery may be necessary at the time or after surgery to either improve the chance of healing and functional outcomes or maintain cosmetic appearance. 

Radiation causes a dry mouth, inflammation of the mouth and throat lining, changes in taste, weight loss and tiredness, and long-term swallowing difficulty. This can include dental problems, and, in some cases, necrosis of the jaw. This is why maxillofacial surgeons and prosthodontists are needed in the 

MDT to advise on presurgical, pre-radiation dental management and ongoing prosthodontic assistance to maximise more comfortable outcomes. It’s interesting that the literature shows a priority shift in patients from a desire for cure and longevity to the management of oral complications and dental rehabilitation as treatment progresses. This is why comprehensive preoperative and ongoing prosthodontic management is important.

Will I be able to live anormal life after treatment?

Your MDT should aim to maintain quality of life and reduce suffering to as little as possible. Be open in telling your treating doctor your fears of life after treatment and be honest in any difficulties you are having. Take Howie Butler, who runs Cancer Heroes, he is a great example. He was diagnosed nine years ago and has had seven recurring incidents and 72 sessions of radiation. However, he is fully functional, works a day job and runs Cancer Heroes and in his own words, “This terrifying journey was turned into some of the best years of my life and the most amazing experiences one can only dream of.”