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[Mich12]

Hi there,

I have had white and red patches on both of my inner cheeks and the sides of my tongue since last summer. They don't really hurt. My dentist sent me to a oral surgeon and he tried various ointments, salves, and even oral steroids to no avail. Last week he did a biopsy and I got the results today. He said he will see me again in 3 months unless it changes than I am to go back for him to take a peek. Right now we are not treating it, just watching it.

Naturally I am scared to death. Here is what is on my pathology report:

Comment: This specimen exhibits a few features of, but is not diagnostic for, lichen planus. If the pathosis represents lichen planus, it should migrate and change patterns; otherwise, the possibility of a contact hypersensitivity reaction or an evolving epithelial dysplasia cannot be ruled out.

Diagnosis: Buccal Mucosa: Hyperorthokeratosis, Hyperparakeratosis, and chronic mucositis. (See Comment)

They pretty much ruled out lichen planus - the report says, "This specimen exhibits a few features of, but is not diagnostic for, lichen planus". Mine doesn't move so that is why they cannot rule out an evolving epithelial dysplasia. So naturally I am freaking out and scared.

Has anyone else had anything like this? If so what was the outcome? Is this considered a pre-cancer?

Thank You.

[BrightLight]

Hi there - I have no experience to share, I just wanted to say I am sorry you are worrying, it's understandable. Do you think it might help to call the dentist and explain your fears and ask him to explain the scenario again?  Sounds like there is no diagnosis and that waiting suggests things might clear up - is that your understanding?

[Scampi]

Do you have a good/nice GP?  If so, make an appointment to have a chat about the results, so you can have then fully explained - if not, see if you can get an appointment to talk them through with the oral surgeon.  I know they have this big 'thing' about making sure patients are copied into all results, etc, and in many ways that's good, BUT the reports are written in medical speak (necessarily - to those who fully understand them, it avoids any ambiguity) and that encourages the dreaded googling to find out what it means ... dangerous! 

Talk it through with someone who really understands the results and can properly explain what they mean.

[milly]

I think I would be reassured by the oral surgeons opinion and experience.

He is following you up, and has said he will see you again if you feel there is a change before the 3 month appointment.

I can only speak for gut dysplasia, which is more or less the same tissue, but there are varying stages of dysplasia.. from low to high grade before its considered precancerous.

It is hard not to worry but I think it appears you are being well looked after.

[CLKD]

You could ring and make another appt. with your dentist, good on him for referring you: tell the Receptionist that you took in some of the Report but would like it explained in more detail.  No need to involve your GP - if you have been asked to return in 3 months it is un-likely to be anything sinister  …. lots of long words, glad I'm not taking all that in short-hand  .

If the Consultant thought it was likely to alter he would be having you back more regularly.  When I had breast disease I was back and for every 2 weeks initially 

[Taz2]

Hi Mich. Sorry to hear of the worry you are going through. I have a pub friend who has oral cancer and he was advised to read up on his condition (nothing like yours I hasten to add) via the British Society for Oral Medicine website. I've just had a look for your (possible) diagnosis and have found this info http://www.bsom.org.uk/wp-content/uploads/BSOM-PiL-Dysplasia-Nov-20131.pdf  which explains exactly what epithelial dysplasia is and what causes it etc. I hope it helps. It's horrible to be in the dark about what, and I stress the "what", condition you may have.

Taz x 

[LizeeeH]

Hi

Having worked in a dental practice and referred patients to see the oral surgeon I can vouch that  if they were at all worried believe me they didn't hang about!!! One chap who was a pipe smoker was having surgery within 2 weeks of his dental appointment....so please don't worry

Liz xxx

[Mich12]

Hi there - I have no experience to share, I just wanted to say I am sorry you are worrying, it's understandable. Do you think it might help to call the dentist and explain your fears and ask him to explain the scenario again?  Sounds like there is no diagnosis and that waiting suggests things might clear up - is that your understanding?

Hi there,

Thank you so much for taking the time to reply. I called the doctor and I am planning on going in to go over it again. He has waited for it to clear since last summer and it has not and now it says future oral cancer cannot be ruled out so that is the super scary part. I will do my best though to think positive.

[Mich12]

Do you have a good/nice GP?  If so, make an appointment to have a chat about the results, so you can have then fully explained - if not, see if you can get an appointment to talk them through with the oral surgeon.  I know they have this big 'thing' about making sure patients are copied into all results, etc, and in many ways that's good, BUT the reports are written in medical speak (necessarily - to those who fully understand them, it avoids any ambiguity) and that encourages the dreaded googling to find out what it means ... dangerous! 

Talk it through with someone who really understands the results and can properly explain what they mean.

Hi there,

Thank you so much for your reply! I am going to see the doctor and go over it all again. I am lucky in that I do have a very sweet doctor so that is a huge plus. I did google -  (shame on me!) and it sure WAS scary! No more google for me! 

[Mich12]

I think I would be reassured by the oral surgeons opinion and experience.

He is following you up, and has said he will see you again if you feel there is a change before the 3 month appointment.

I can only speak for gut dysplasia, which is more or less the same tissue, but there are varying stages of dysplasia.. from low to high grade before its considered precancerous.

It is hard not to worry but I think it appears you are being well looked after.

Thank you so much! I am blessed that I am being looked after very well and I will also monitor it and report any change at once. I had no idea that there were varying stages of dysplasia before it is even considered a pre-cancer - thank you for explaining that to me. It helps a lot! 

[Mich12]

You could ring and make another appt. with your dentist, good on him for referring you: tell the Receptionist that you took in some of the Report but would like it explained in more detail.  No need to involve your GP - if you have been asked to return in 3 months it is un-likely to be anything sinister  …. lots of long words, glad I'm not taking all that in short-hand  .

If the Consultant thought it was likely to alter he would be having you back more regularly.  When I had breast disease I was back and for every 2 weeks initially 

Thank you so much, I appreciate your reply very much. I am sorry you had breast disease. I hope all is well now.

Take care.

[Mich12]

Hi Mich. Sorry to hear of the worry you are going through. I have a pub friend who has oral cancer and he was advised to read up on his condition (nothing like yours I hasten to add) via the British Society for Oral Medicine website. I've just had a look for your (possible) diagnosis and have found this info http://www.bsom.org.uk/wp-content/uploads/BSOM-PiL-Dysplasia-Nov-20131.pdf  which explains exactly what epithelial dysplasia is and what causes it etc. I hope it helps. It's horrible to be in the dark about what, and I stress the "what", condition you may have.

Taz x 

Thank you so very much Taz, I appreciate the time you took to look that up and post a link. I will read through that tonight.

Take care.

[Mich12]

Hi

Having worked in a dental practice and referred patients to see the oral surgeon I can vouch that  if they were at all worried believe me they didn't hang about!!! One chap who was a pipe smoker was having surgery within 2 weeks of his dental appointment....so please don't worry

Liz xxx

Hi Liz,

Thank you so much! I feel much better having heard that - thank you for sharing that with me.

[CLKD]

All is well in the breast department  :thank you:

Did you see your GP or Dentist yet?