HPV – The Conversation

“Cervical cancer of the throat” – when medical terminology gets in the way of a good story

I am a health communicator who has been trying for years to start conversations about human papillomavirus (HPV) related oropharyngeal cancer. This holiday period I’m going to try a different tactic and start talking about “cervical cancer of the throat” instead.

Human papillomavirus related oropharyngeal cancer. That is one hell of a mouthful. Eighteen syllables, forty-five characters. For the initiated it can be abbreviated to HPV+OPSCC. For those of us without a medical degree this cancer includes a name with a truckload of unfamiliar terms, silent and non-descript symptoms, a ridiculously lengthy incubation period, plus the stigma of sexually transmitted disease. No wonder celebrity patients like Michael Douglas distance themselves from it. This cancer is a health communications nightmare.

“Cervical cancer of the throat”. Far less of a mouthful, pun intended, and just as importantly, it includes terms with which people are familiar. It is not medically correct. I can hear clinicians responding with pedantic rage and fury as they brandish their telescopes and surgical head lights in the air. But in order to preserve my own sanity I hereby choose to ignore them. I am not a medical doctor. When talking to other non-medically trained people I am not going to fuss about using Stedman’s approved terminology. My goal is effective communication.

Here is my hypothetical holiday gathering scenario. Let me set the scene. I’m at New Year drinks on a balmy summer evening talking to somebody called Mark. Let’s pretend he is an architect. Mark and I have not met before. As our conversation bounces back and forth and eventually touches on work and gainful employment I will mention the words “Cervical cancer of the throat”. I am hoping Mark gives me a look which can be loosely translated as “You have my attention but even I know that is not possible. Please tell me more.” I plan to steady myself with a sip of something cold and do my best to keep Mark’s attention long enough to unravel more of the story:

  • You’re right, the cervix is not in the throat. But most people understand the relationship between HPV and cervical cancer. This is a cancer in the throat caused by HPV. Ooh, just a minute, let me grab a rice paper roll.
  • Where in the throat? Well, it’s actually not just the throat, it’s anywhere in the oropharynx. That includes your throat, your tonsils, your tongue base, soft palate, pharyngeal walls. Just about everything you used to swallow that mouthful of beer.
  • Yes, you’re right. Men don’t have cervix’s but they do have throats. These cancers effect everyone with a throat but men are most at risk. Ooh, I can see prawns.
  • Yes, we see a lot of these cancers, more and more each year. In countries like the US and Canada the incidence rate of HPV related oropharyngeal cancer is now higher than cervical cancer. Oropharyngeal cancer in NSW has nearly quadrupled in the past twenty years, jumping from 88 patients in 1993 to 322 patients in 2015 (data supplied by Cancer Institute NSW). Mmm, these prawns are delicious.
  • Why haven’t you heard of it before? Why now? Two main reasons. The first is oral sex. Over the past few decades sexual practices have changed, resulting in more HPV infections of the oropharynx. Secondly, there can be years, even decades between the time a patient is infected with HPV and when they develop a cancer. Ooh, more rice paper rolls, yes please, I will try not to drip sauce all over myself this time.
  • Who is most at risk? Any adult who has been sexually active in the past thirty years who has not been vaccinated against HPV. Yes, that’s right, Gardasil is the vaccination your kids had at school. Four out of five adult Australians are estimated to contract HPV in their lifetime. Baby Boomers and Gen Xers are most at risk. Looking around the room I would say that includes everybody here. Heavy smoking and drinking are not necessarily risk factors. You’re right, perhaps Great Aunty Ev need not worry.
  • If it is similar to cervical cancer can we screen for it? No, not at the moment. But we’re working on it (seriously we are, but that is confidential, watch this space). You might hear about screening tests which talk about saliva but you have to question exactly what they are detecting. Just like the cervix, you have to scrape some cells or take a biopsy from tissue in the orophaynx in order to properly screen or diagnose cancer (I’m sure you’re wincing but I’m not offering apologies, at this point in the conversation I am taking far too much pleasure in describing a pap smear to someone without a cervix).
  • So what symptoms should you look out for? A lump in the neck, earache or pain on swallowing which persists for a longer than a few weeks. Don’t worry, it is still a relatively rare cancer, we just want people to know about it so they do not have a delayed diagnosis which compromises their treatment outcomes. But enough of that, tell me more about this project you’re working on.

“Cervical cancer of the throat”. Go on, try it as a conversation starter this holiday season.