Dear all,

I hope you are well.

I joined this forum after researching moderate epithelial dysplasia, I have had severe dysplasia which was removed January 2025.

The tissue removed came back with the following pathology results;

Tongue Resection: This specimen has been entirely processed to show tongue mucosa with a well demarcated area of orthokeratosis
showing epithelial atypia amounting to mild, moderate and severe epithelial dysplasia. In the centre of the specimen there is an area of
irregular epithelium with focal early invasive squamous cell carcinoma. This area measures approximately 6 mm across and to a depth of 1.2
mm with no evidence of lymphovascular or perineural invasion. This area lies 8 mm from the closest buccal peripheral margin and 4.2 mm from
the deep resection margin. Additional levels have been requested to look for further areas of early invasion although none of the possible areas
are closer to the peripheral margin

The area of severe epithelial dysplasia is excised (lingual margin 0.4 mm, anterior margin 1.5 mm, buccal margin 2.4 mm) although
orthokeratosis with moderate epithelial dysplasia is present at the posterior mucosal margin (Block A9).

My consultant advised me that with moderate epithelial dysplasia, they would monitor it. However, I am concerned and worried a lot that this may turn into cancer. Can someone please provide some advice that may have been in a similar situation as me?

I am happy the severe dysplasia has been removed, however, concerned about the moderate dysplasia found after I had my surgery.

Thank you.

Hello Makkie,

I just responded to your private messages that you sent me.

Reading what you posted from the pathology report this line sticks out at me:

"focal early invasive squamous cell carcinoma".

I do not know if they are merely not trying to alarm you or what, but that reads very much to me like an actual cancer diagnosis, and very similar to mine.

If you are not currently being seen at a Comprehensive Cancer Center, or at a minimum seeing an ENT Surgeon or Oral Surgeon who specializes in Cancer, you may want to seek a second opinion there.

When my Oral Surgeon called me back with my Pathology Report, which was "focal micro invasive squamous cell carcinoma", he said "sorry to say this, but it WAS cancer. He also suggested that I be scheduled with one of their ENT Cancer Surgeons for follow up surgery for wider margins to ensure all cancer was removed (my margins on my diagnostic biopsy were not as large as yours though, as I recall).

It was at that point I mentioned to him I had already decided 5 years ago, if my dysplasia converted to actual cancer I'd seek out the best Comprehensive Cancer Center in New England for treatment there.

He was very gracious and had Surgeon in mind whom he highly recommended I seek treatment with, and facillitated a rapid transfer of records (easy these days with electronic records and such).

They did not find any more cancer in my case when they did the larger partial glossectomy (still a very conservative surgery, my surgeon did a great job of getting more, with large margins of caution for any questionable tissue, while preserving tongue function and not willy nilly removing more tongue than needed for a high degree of confidence in my healthy outcome and safety).
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The other line that stands out is

"Additional levels have been requested to look for further areas of early invasion although none of the possible areas
are closer to the peripheral margin...."

That to me is the pathologist telling the surgeon they would like to look at other adjacent tissues that were not available to look at in the biopsy specimen they received, and they are requesting the surgeon to remove more...but you will definitely want to discuss this all with your doctor(s) and ask if that is correct understanding of the pathology report.

_______________________________________


I would not be concerned too much about the dysplasia, vigilant monitoring annually for life is what my doctors recommended when I was at that stage.

The Focal Microinvasive Squamous Cell Carcinoma with the pathologist requesting more tissue to look at, that's the much larger issue.

In my understanding you are in a very similar boat as I, and you should probably be scheduling surgery for a larger biopsy sample, but you'll want your next surgeon (or current one if they are a cancer specializing one) to be reviewing that pathology report and communicating with the Pathologist or what every they need to formulate a plan.

The term "invasion" is the red flag of what the pathologist is looking for.

That is when those irregular epithelial cells of the tongue start penetrating the basement membrane that seperates the tongue "skin" from the muscles, nerves, lymphatic and blood vessels beneeth the "skin".

Carcinoma In Situ is where the cells are so radically deformed structurally or genetically, that if left alone they would turn into invasive cancer 100% of the time.

Severe Dysplasia only has about a 10% chance of converting.

Carcinoma In Situ is (as understood by most medical folks, although some of these categories between Severe Dysplasia and Carcinoma In Situ have overlaps and possible disagreements for criteria) the earliest form of cancer with no invasion into other tissue types.

Microinvasive is the next step JUST beyond that, where the cancerous cells have just barely started to penetrate into tissue layers of other cell types.

It is still a very good diagnosis to have, as they have caught it very early!

But as explained to me it is most certainly active cancer (mine was, as explained to me by my doctors).

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So even after my surgery last March, where they found no further cancer, I went back to my ENT Oncology Surgeon (who was Oral Surgeon who progressed and now is a top ENT Oncology Surgeon at a top CCC) every two months for the first year, and now in my second year once every 3 months for close follow up.

No chemo or radiation for me.

Have some other areas of concern which we are watching closely and may do additional biopsies if they change or progress.

But that's the key I'd say is ruling out the presence of any more cancer.

So I'd request a follow up visit with your surgeon, and if they are not at the minimum someone who treats cancer regularly, by all means seek out a second opinion at a Comprehensive Cancer Center if that is at all an option for you.

I'd politely ask they explain that patholgy report, especially the sections that I referenced above, and explain it to your satisfaction for your decision on how to proceed in all the specifics of your particular situation (We have no idea of all the other particulars of your overall health and conditions that may change how your doctors might be approaching your situation, still you can ask those questions to your medical team, and seek satisfaction that you are in good hands with an excellent treatment plan and course of action).

I'll send you some more stuff in your private message string you sent, I responded as if your pathology report just said dysplasia, and that is not what I am reading in black and white.

Please take every confidence that you well situated to address this, whatever your situation actually is.

You just don't want to not ask these types of questions and do your due diligence advocating for your own health.

Best wishes and keep your chin up!!!

You got this! (as one my OCF mentors said to me when I was first diagnosed).

Hello Makkie,

The other thing that happened when I first sought treatment at another institution once I received my cancer diagnosis was a review of my biopsy slides by the Comprehensive Cancer Centers (CCC) pathologists.

I wasn't seeking a second opinion per se, as my Oral Surgeon had already recommended that I be scheduled for a larger resection by their in house ENT cancer surgeon.

So the oral surgeon who did the biopsy and called me to tell me that the results were cancer, also told me that I should get a larger section removed to ensure all cancer was removed with sufficient margins, as my diagnostic biopsy edges were a little too close to meet the standard of care for resection of actual oral squamous cell carcinoma.

Once I requested another institution do the surgery, that was kind of like seeking a second opinion, well at least that triggered them reviewing my biopsy slides.

That was not to just to ensure accurate diagnosis, but also for surgery planning purposes, how much, and in which direction etc...

This other CCC pathologists confirmed the other CCC pathologists diagnosis.

This new CCC ended up being a closer drive for me, has a stronger oral cancer program, and is in a major New England city, with lots of advanced research, surgery, chemo and radiation abilities should I ever need those.

R/
CQ