Kia Ora! I am Mel.
From almost the moment of my diagnosis of laryngeal cancer and our ensuing conversations about treatment, the phrase “head and neck cancers are different” was one I heard, and I continued to hear throughout treatment and recovery. I didn’t even question it – in fairness I was processing a lot and understanding the unique nature of these cancers was down my list. But as time passed I became curious and started to find out why and how they ARE so different, and how those differences affect how both their treatment and the people who living through it.
One reason is that the anatomy these cancers inhabit is unique, and responsible for some of our most vital functions. Our heads and necks deal with eating and swallowing, with speech, facial expressions and communication, with breathing, and with how we look. These are all fundamental to how we live our lives, and in some cases to our very identity. A cancer that affects how my face looks is going to have a distinct impact upon me, as is one that changes my voice – it will change how I see myself and how I interact with the world on all sorts of levels. Some of these functions are just absolutely necessary to life itself – if I cannot breathe, things aren’t going to go well for me for very long! Similarly, a cancer that affects how I eat and swallow is going to have an impact on me all day, every day.
This is not to say that these cancers are more or less significant to one in my colon or my liver or my breast – but often a cancer in an internal organ can be treated and I will present much the same from the outside, potentially. A breast can be reconstructed and no one needs ever know it was removed, in a way that is just not always possible with cancers of the head and neck. It is important to note here that I do not subscribe to a “hierarchy of suffering”… any cancer is terrifying and has an enormous impact on the body and the psyche of the person it has grown within.
However, cancers of the head and neck remain difficult to treat and the effects of treatment can be lifelong in a way that is not always the case with cancers in other parts of the body. Treatment of cancer in the organs of the head and neck must balance preservation of those vital functions – breathing, eating and speech – in a way that can be less common with cancers in more internal organs.
They can affect our appearance and our ability to speak in ways that play upon our very sense of self. This is why head and neck cancers are often treated by specialised multidisciplinary teams that include surgeons, radiation oncologists, speech therapists, dietitians and swallowing specialists… an entire team is needed to balance out the many facets of the disease, its treatment, and the effects on the human being going through that treatment and making a life for themselves afterwards.
The anatomy of our heads and necks is incredibly complex. Tumours here cannot always be cut away with ease, as it is an area so dense in nerves, arteries and small but crucial muscles and structures involved in breathing, eating and speaking.
This impacts treatment, as a tumour may not be able to be removed without threatening life and function. Radiation targeting the tumour often cannot avoid these structures (like salivary glands, the muscles involved in speech and swallow, or even the spinal cord).
In my case, I was lucky that my radiation field was low enough to avoid the majority of the salivary glands, but the glands that were within the field made thickened secretions that were extremely unpleasant and, for me, a sensory nightmare. The salivary glands are among the most radiation-sensitive tissues in the body. I count myself lucky that I was able to make spit throughout and after my treatment though!
We don’t think about spit much, but it is essential to our ability to swallow – and we swallow a lot, while eating of course, but also when asleep, or when just being a human. It is easy to not think about it until that ability to swallow with ease is gone or compromised. For many undergoing radiotherapy in the head and neck, chronic dry mouth is a terrible effect that can take a long time to resolve, or even be permanent.
The anatomy of these areas is often also highly sensitive to radiation. The mucosal lining of the mouth and throat, for instance, is particularly vulnerable to damage from radiation. As well as causing that unpleasant thickening of saliva and mucus I experienced, it can cause incredibly painful ulcers which can make treatment hard to endure.
I was “lucky” that the modified anatomy of my tracheostomy and laryngectomy separates my trachea from my oesophagus, (my breathing system from my eating one), and this meant the trachea bore the brunt of my ulceration. With the nerve damage and just a lack of nerves in my modified system, I couldn’t feel those ulcers especially. They still caused me a lot of distress as they caught and developed horrid mucus “growths” I would cough out my trachea in a highly distressing way, (sometimes they threatened to block my stoma they were so large – which was panic inducing, I have no other access to air but that stoma), but I was spared a great deal of the pain many experience from radiotherapy ulcers in a more usual throat set up.
Another big difference between head and neck cancers and those in the rest of the body is that a large number of head and neck cancers are driven by virus – mostly HPV. If you are of my Generation X, you were never offered the HPV vaccine, and a large number of cancers in this part of the body stem from the Human Papilloma Virus. I will never know if mine is, as they didn’t test my larynx, but for many HPV is the precursor for cancer in this part of the body, especially oropharyngeal cancers like those of the tonsils, base of the tongue and upper parts of the throat. These HPV related cancers of the mouth and upper throat are undergoing a rise in many populations around the world, especially the more affluent ones. HPV-positive cancers tend to respond particularly well to radiotherapy, and patients often have a higher chance of successful treatment compared with cancers caused by other factors.
And another difference between head and neck cancers is that “field cancerisation” can be a factor. These are the parts of the body we may expose to alcohol or to smoke, and we all know that these are things that can lead to a higher risk of cancer. The head and neck can bear the brunt of that interaction between our bodies and what we choose to put in them. This can mean that sometimes people develop independent multiple tumours in these parts, or a recurrence of cancer in the same or nearby areas.
It also can mean that a cancer in these parts of the body can be seen as somehow “deserved” for poor choices made – I struggled with this, as someone who did smoke. I gave up nicotine over 6 years ago, but I absolutely feel a stigma for having a “dirty” cancer that was somehow “my fault”. This sense of a moral failing is one I think is easier to avoid in cancers in other parts of the body – no one asks a colon cancer patient “when did you give up smoking?” but this is absolutely a question I have seen asked of people with head and neck cancers!
While I encourage everyone to make healthy choices, I also want to be clear that cancer is not a punishment from on high for smoking or drinking and there should be no moral value placed upon it. Alcohol is a highly carcinogenic substance, one I have pretty much given up since my diagnosis for a variety of reasons. I love being free from my slavery to nicotine and I will certainly never smoke again – in fairness my new anatomy means it is on a practical level very difficult for me to do so, but even before that I LOVED that I had turned my back on that addiction. I do not consider my illness a “just punishment” for mistakes made, or that I am a lesser person for having enjoyed a drink or a cigarette at other times in my life. If cancer was a punishment for moral failings, I think there are a great many people more deserving of that punishment than me! The inequity of cancer is that many, in fact, most, who smoke and drink will never develop a cancer – and that many who DO end up facing this disease may never have smoked or drunk alcohol at all.
People are people – we are complex and unique and difficult to fit in boxes. So too are head and neck cancers – and like people, head and neck cancers are easy to misunderstand, or often grouped together with the rest of the body (or population) for ease in a way that diminishes our understanding.
I knew almost nothing about head and neck cancer when I was diagnosed and a big part of me wishes I had been left in that place of blissful ignorance. Instead I have been put in a position where I have had to learn an enormous amount in a short time. As head and neck cancers are on the rise, it is worth us all learning more about them – and if you can learn from my experience rather than your own, I encourage that!
I wish I had not had to learn any of this. I wish I was the person I was before this diagnosis, a person with a voice who took speaking for granted, who had a job as a teacher they loved and that felt meaningful, who knew nothing much about head and neck cancer and who didn’t need to be strong, or a health advocate for themselves or for others. I would love so much to be that person again. I never will – I am here now. And while sometimes (oftentimes) it feels a shitty place to be, I will do what I can to make meaning that works for me from this. And helping others understand a bit more too helps it feel more bearable, as well as helping me to understand more myself.