Was it a dental problem? We then got into a cycle of being shunted around from one hospital or clinic to the next. We went from dentists to maxillofacial and back again. The numbness was slowly getting worse but we were not getting anywhere. Having had two cancers already, we checked with the Royal Marsden and did the rounds there too. A very senior paediatric oncologist saw us and referred us to a number of people. My son’s jaw was ultrasounded and there, nestling under his chin was an odd looking little lump. A tumour? No, probably not we were told.
The paediatric oncologist was very clear. Whatever the problem was, it wasn’t oncological. Which was a relief. But the problem wasn’t going away. And he was starting to get pain in the jaw too.
Finally we tried another dentist. She x-rayed and saw that his wisdom tooth had been pushed out - it wasn’t right. She referred us back to maxillofacial - immediately.
I can vividly remember the day. My son was seen by a registrar called Amir Ketabchi. He recognised immediately what was going on. We could tell by the flurry of activity around us that this was serious. George was booked into a CT scan the next day. The result was clear – a tumour in the right mandible.
The only question was what kind of tumour? We desperately hoped for something benign and easy to treat. But luck was against us. The ‘not an oncological problem’ was an osteosarcoma.
We will never know what difference, if any, an earlier diagnosis would have made. If we had known that George had Li Fraumeni Syndrome perhaps more alarm bells would have gone off. As it was the disease progressed quickly during the time we shuttled backwards and forwards trying to discover what the problem was.
Why am I writing this now? Because we found out afterwards that a numb lip or chin is an early warning signal for cancers in the jaw. The medical literature is full of cases and papers that suggest that cancer needs to be ruled out as a cause of numb lips or chin. In fact one recent paper, entitled ‘Numb chin syndrome: an ominous clinical sign’, concludes that:
…we recommend that patients presenting to their general dental practitioner with a numb chin be urgently investigated for a potentially undiagnosed malignancy or MS and be referred to their local oral and maxillofacial unit as an urgent 'target' referral.If you have found this page because you're searching for 'numb lip symptoms' or something similar, please get it checked out - do not hang around. And if necessary, go to the above link and print off the abstract (or this article if you prefer), and take it with you to the doctor.
During the two and half years that George struggled with the disease we saw dozens of doctors. In all that time only one of them, a newly promoted consultant in Kingston Hospital, bothered to ask the question: 'how did the disease first present?'