Hello TBO,

Welcome to the forums.

Dysplasia is a potentially pre-cancerous condition.

It is similar to say a colon polyp detected on colonoscopy that gets removed and biopsied and comes back not entirely healthy but not strictly pre-cancerous either.


My oral cancer experience started in a similar fashion as you described.

Roughly 5 years before I developed cancer on my right lateral tongue a dentist noticed a white spot. She was super crucial in educating me to take this dead serious and that I had to get it biopsied if it did not go away in a few weeks.

My biopsy was moderate epethial dysplasia. The oral surgeon who did that biopsy then referred me to an oral surgeon who specialized in cancer for ANNUAL follow up, essentially for life.

It was explained to me with the moderate dysplasia I had ROUGHLY a 10% chance of it converting to cancer over my entire life.

Mild dysplasia I am guessing has a slightly less chance of converting to cancer.

Early detection is crucial not just in terms of survival or suffering in recovery from radical treatments but also quality of life issues for things like speaking, swallowing, saliva, keeling your teeth etc…

My 2nd oral surgeon (1st one who specialized in oral cancer) moved about 3 years into follow up and referred me to another who I saw for about 2 years before a pimple like lesion errupted next to the 1st biopsy scar.

So roughly 5 years after the initial possibly pre-cancerous moderate dysplasia this tiny zit like pustule was removed sent to pathology and came back cancer.

As soon as I had a cancer diagnosis I sought out treatment at our nearest Comprehensive Cancer Center and was triaged in to see a Cancer ENT Surgeon in like 2 days.

Very partial glossectomy like a month and a half later, with wider margins and a throat scope and no further cancer found just more dysplasia, this time mild grade.

A month later and I was 90% back to normal 3 months and I could chew on the roughest of foods and eat spices.

Catching it early allowed that.

No chemo or radiation thus far, no neck disection for lymph node removal thus far.

Bi monthly follow ups the first year, every 3 months this second year after surgery.

5 years of no evidence of disease you are considered in remission (semi “cured”).

So if your insurance situation does not allow regular follow up; at an absolute minimum stay on red alert for any changes or developments doing your own oral exams and seek competent medical care if you ever notice anything change and work it out until you have definitive answers.


Since my surgery I have had this year ultrasounds, male mammogram, abdominal MRI and a PET/CT of mid thigh through skull.
(some from other symptoms)

3 Armpit lymph nodes on the PET/CT lit up from the tracer. Pending biopsy decision on that, possible its just inflammation or infection.

All that to say “getting in the system” early and staying on top of things and doing your part can help to keep things from getting much worse.

There are no garuntees in this, but sometimes you can be proactive and help yourself be situated well.

So now at my next visit we will discuss the PET/CT and I hope to have the lymph nodes biopsied before then.

Waiting on interventional radiology to decide if they can get to the nodes with ultrasound guided fine needle biopsy.

Here is hoping your experience ends with just some mild dysplasia that never progresses to anything bothersome.

Best wishes and take care,

R/

Chris


11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue
1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue