Hello everyone,
I’ve been away from this community for quite some time. I do feel a little guilty because you were all so helpful to me in the past. I’m honestly not sure I would have got through some of the darker days, and especially the nights, without the support I found here. I’m sorry I haven’t been around to support others in the same way, but I’m back now with an update and, unfortunately, a few more worries.
It looks as though my old chats have disappeared. For a while I had opened a new account that I shared with my daughter, as she wanted to understand what I was going through and how best to care for me. This is now my own account again. I don’t want to worry her unnecessarily, so I thought I would come back here and talk to people who understand.
After radiotherapy in 2018 and some dental extractions in 2021, I developed osteoradionecrosis (ORN) of my right mandible. It has been a long process involving antibiotics, insertion of gentamicin beads and PENTOCLO treatment.
Now, eight years after radiotherapy, the gentamicin beads have been removed (only recently). I have been left with a hole in my gum which, although isn’t painful, is uncomfortable and a real nuisance. Every time I eat, food gets caught in it and I have to gently flush it out with water using a syringe. I’ve been advised not to use a Waterpik because of the pressure and the possibility of pushing food further into the opening.
My main worry now is something new. As well as the hole on the treated side, I’ve noticed two tiny painless red spots like tiny sores on the other side of my mouth. One just underneath my tongue and another slightly higher up on the inside of my cheek.
I have an appointment with my maxillofacial specialist on Monday, so thankfully I will have them looked at very soon. But, as many of you will understand, once you’ve been through H&N cancer it is very difficult not to worry when something new appears in your mouth.
Has anyone here experienced anything similar? particularly small red spots? Did they turn out to be something harmless such as irritation, trauma or an ulcer?
I’d really appreciate hearing about anyone else’s experience.
Thanks everyone x
Has anyone here experienced anything similar? particularly small red spots? Did they turn out to be something harmless such as irritation, trauma or an ulcer?
Hi and welcome back. I missed you entirely as my treatment started just around when yours finished. Hazel (RadioactiveRaz) would have been here and she still is.
Sorry to read about all the trauma with your ORN. As for little red spots, yes I get these sometimes and my applying my three week rule usually sees them go without any further action. It's good that you're being seen so quickly. Try not to panic. Are two new separate sites likely to be cancer? I'm not convinced. Good luck and let us know how you go.
And heavens, don't apologise for not being here. We all support each other whether we stay or go away to Iive our lives as soon as we can escape.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
