Oral Dysplasia diagnosis reaching out to others

Hi,

I have posted previously about being diagnosed with oral dysplasia.

I was first diagnosed August 2022 and had my first op September 2022 after deciding to pay for my tongue laser surgery, due to the long list and backlog of patients waiting for surgery.

I was told that histology confirmed clear margins and it was mild grade dysplasia, even though my biopsy result came back as moderate dysplasia, hence the decision for surgery to remove the affected area.

When I went into my first op I also had a white patch on the other side of my tongue. I now see my consultant every 6 months in what is called 'watchful wait' monitoring. 
 

I came away from my check up appointment yesterday feeling deflated and wondering if it would help to speak to other people diagnosed with dysplasia, I can't seem to find a local support group. If you are reading this and have had dysplasia and want to reach out, please do.

I live in Lancashire.

My mum was diagnosed with oral cancer, I accompanied her to appointments and saw her go through the 'watchful wait' monitoring and then neck dissection op and subsequently succumb to cancer so I fully understand what a dysplasia diagnosis can mean in terms of potential for my future.

My dysplasia is possibly genetic, I have never smoked or drank lots of alcohol, although I have enjoyed social drinking so not completely tee-total! 

Thanks for reading

  • Hello Subiedoo and thanks for posting.

    I'm sorry to hear that you're diagnosed with oral dysplasia and are experiencing difficulties with finding other people in the same situation to connect with, hopefully some of our members who have been in a similar place will stop by soon to chat with you. If no one comes here however, feel free to insert the terms you're looking for in the search tool 'Search forum' and join the conversation, everyone in the forum is very friendly and I'm sure they'll be happy to talk with you.

    Wishing you all the best,

    Renata, Cancer Chat Moderator

  • Hello there I was wondering how you are getting on with this? I have just been diagnosed and I feel very frightened. Thanks so much. 

  • I gave oral dysplasia and I had an op about 4 years ago. I have just had another biopsy on my gum and it’s high grade again I think. I get the results on Thursday 1st may. I have had this going on in my mouth for years. They don’t know what causes it but really need to get some answers as to why and what I can do to stop it happening ? I have leukoplakia too. Had tongue cancer 10 years ago with no recurrence thankgod. Thankyou x

  • Hi there, I’m sorry about your situation. I’m pleased to hear about the lack of reoccurring cancer of the tongue. Did you have dysplasia before that diagnosis? I don’t seem to have anything else just a random patch of mild dysplasia and possibly another on cheek. No idea why it’s come out of knowhwre. I just feel very scared at the moment and it’s making unable to cope with day to day life x