So not only do I have a tumour with an odd name, its also pretty rare. I was talking to a dentist who’s never come across one in 13 years. This makes finding out information pretty hard. I had found a support group for people diagnosed with ameloblastoma but there seems to be nothing comparable for keratocysts, so I will attempt to write about what I have found out and been told.

First off, even the name is confusing keratocystic odontogenic tumour, is it a cyst or a tumour. Up to 2005 it was classified as a cyst, after then it was reclassified by the WHO as a tumour due to its aggressive nature (in terms of how much bone it can destroy and how frequently they recur), the structure of the tissue within the tumour and the genetics surrounding it. As someone with one of these, I prefer tumour, cyst sounds like something easy to treat not something that is going to need surgery to sort out (apologies to anyone with a cyst, they are horrible and painful). In case anyone was wondering odontogenic refers to the fact that the tumour originates from the cells and tissues that form the teeth and related structures. As mentioned before we are referring informally to the tumour as Lurleen, this is mainly due to my addiction to the Simpsons game on my phone and also because it’s easier for the children to understand.

The next thing is how do they happen. Sadly again it’s nothing straight forward and is the subject of some debate. It’s probably easiest to start with things that don’t cause them. It’s not tooth decay or gum disease, so I don’t have to worry about the time I went to bed without brushing my teeth or ate too many sweets. One theory is that they are caused by cells that were supposed to turn into a tooth but didn’t and ended up as a cyst instead. The other, and frankly geekier, theory involves mutations of something called the Sonic Hedgehog Pathway, this just for the name alone gets my vote. Genetics go way above my head but from what I can gather this particular bit of genetic code is involved in tumour suppression and when it goes wrong you can end up with these tumours in odd places.

Just to clarify it’s this Sonic
not this one

And finally a bit about the treatment, which may sound a bit like using a sledgehammer to crack a nut. To give you some idea of the size of the problem look at your own teeth and count the one in the middle as 1 and your wisdom tooth as 8, my tumour extends through the right hand side of the jaw bone from tooth 2 to tooth 7. My consultant, Mr F, has said that for it to get to this size it has probably been growing for years, and typical KCOT’s work their way through the bone for a good number of years before causing the bone to expand. I have obvious expansion on both sides of my jaw bone, which also gives an indication of the length of time this has been growing. I have been quite unlucky in that the roots of several of teeth have been resorped as a result of pressure from the tumour onto them. We were also shown on the CT images how the tumour was pressing down on the nerve that runs along the jaw, which was causing a considerable amount of pain, luckily when the biopsy was taken some of this was relieved. A further factor that influences treatment is how often these tumours recur. Anywhere between 20-60% of tumours recur within 5 years of initial treatments, so one of the aims is to get rid of any microscopic daughter cells that may be within the bone after the cyst has been removed. That is why the cavity will be treated with something called Carnoy’s solution prior to the bone graft being inserted. But while it all sounds a bit daunting, I’m amazed that I am only expected to be in hospital for one night (expecting that to go up to 2 to allow for diabetic fasting) and that recovery will be a lot shorter than expected too.

Well that’s been a bit of an epic post, so it’s time for me and Lurleen to say goodnight.