My tumour was in my orbital floor, removed 11 years ago, and followed up by radiotherapy. At that time I had a node in my neck (still there), and one in my lung. I had a wedge resection of lung 3 years ago, and enucleation of my eye due to radiotherapy impact 10 years ago. My follow up care was led by my Head and Neck surgeon, with Ophthalmic advice when required. I had a CT head and neck, abdomen and chest; MRI sinuses in May 21 which did not raise any issue. I moved to another Health Board in Sep 21 and have been seen by an Ophthalmic Consultant twice for annual review of my optical prosthesis. My Head and Neck consultant was moving to another post and has referred me to a local ENT surgeon in August 23. I have not yet seen this consultant. Over the last year I have developed exposed bone in my mouth where I had preoperative tooth extraction carried out. My dentist referred me to oral surgery where I had a CT scan carried out. The oral surgeon referred me to an second oral surgeon who seemed not to think the exposed bone was significant, referred me back to my dentist and the and the new (as yet unseen) ENT consultant.
I am concerned that a) I have no clear idea of who will be undertaking my long term monitoring and b) I still have exposed bone in my mouth.
I would welcome your advice. Celia
Hi Lochaberlass
I can see why you're not sure who is actually looking after your overall care. Do you have a cancer nurse specialist, sometimes referred to as a keyworker or Macmillan nurse, as they should be able to help you.
As you know, the online community is divided into different support forums so you might also like to join and post in the head and neck cancer forum as you'll probably find others there who can help with your question about the exposed bone in your mouth.
To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
