Hello Tinsley,
I have experienced a similar evolution from moderate dysplasia to a micro invasive squamous cell carcinoma.
My cancer was a teensie bit more penetrating by definition going through the propia lamina ("a thin layer of connective tissue that forms part of the moist linings known as mucous membranes or mucosae"-Wiki) from the squamous cells (essentially the tongue "skin") to the connective layers of tissue beneath. But just barely, so the pathologist deemed it a stage one, microinvasive. Just barely passing the carcinoma in situ.
Re-ask all these questions, and more, when you visit your doctor, but this is as I understand these pathological categories of grading of cancers.
Dysplasia or atypical cells are when the look at the biopsy under a micro scope and see that there are changes within individual cells like increased size of the nucleus compared to the cytoplasm of the rest of the cell, many apoptosis (cell programmed death...if only all the cancer cells just died off like this before they'd propagate they would not progress to the diseases we call cancer). They also see changes in how the cells fit together or the "architecture", specific tissues for various body parts are designed to be layered in an ordered way, and when the cell layers look all jumbled up, or a disrupted pattern and things like that.
So, there are differing degrees of dysplasia or cellular atypia, but in general they are all considered to be potentially precancerous changes.
My oral surgeons said I should be followed by an oral surgeon for life for annual examination and close follow up with an oral surgeon experienced in treating tongue cancer and pre-cancerous conditions after my first biopsy came back moderately dysplasia. I was followed for I think about 4 years, and last summer the lesion area developed a tiny pimple like pustule that was sore. Pain was a new change. That triggered the biopsy that found actual cancer, albeit microinvasive, but that's the very early stage you want to catch it at, and why the other doctors said see someone who deals with this daily and see them annually. Watch it closely.
I rarely drink, don't smoke, and don't use oral tobacco products or anything like that.
Mild dysplasia being the least intense changes, but things aren't 100% normal, and a slightly elevated risk of those changes progressing to cancer.
Moderate, slightly more intense changes, and an even slightly more elevated risk of converting to cancer (what happened to me on my tongue lesion).
Severe changes are pretty intense, not quite to the degree of being called cancer, and with an even higher risk of converting to cancer.
Carcinoma In Situ is where the changes are such that there are cells that have mutated to such an extent, they are no longer normal, but they haven't penetrated into tissue layers where the original cell line did not develop.
So, for me if my squamous cells penetrated that basement membrane and started growing where the muscle cells and nerve cells etc... that is no longer Carcinoma In Situ, but invasive cancer.
So, yours is the earliest actual cancer category.
Again ask your doctor all of this stuff again, for clarification and correction. My understanding from what you had written is that the tissue sample they examined had both severe (high grade) dysplasia, and carcinoma in situ.
It's possible the pathologist was hedging their bets a little and was on the fence if those cells were truly carcinoma in situ or high grade dysplasia, or if they were in fact saying both types of cells were observed.
The full pathology report may flesh that out for you, and you can ask your doctor to explain that or clarify which or if both situations apply.
The comment about the "lesion involves the edge of the biopsy" was similar to what mine said. My oral surgeon that found the cancer didn't think it looked all that suspicious, so he took very tiny margins, and the dysplasia and cancerous changes were found right at the edge of the excision, which obviously is not idea.
My moderate dysplasia biopsy pathology report said the same concept about the dysplasia extending to the border of the tissue sample removed.
I was concerned they did not get all the dysplastic cells on the margins of the biopsy excision and asked my cancer specialist oral surgeon if they should go back for clean margins like they would if there was actual cancer. My Boston Medical Center doctor said the evidence is very scant either way on if going back to remove all dysplasia is helpful, and whether the trauma and inflammation from multiple surgeries may be a worse potential malignancy trigger then just letting some dysplastic tissues go, albeit watching the tongue (in my case) closely. He was willing to “remove as much of my tongue as I wanted”, and I was like, I don’t want any of my tongue removed, unless it is going to stop a cancer. In the end he said if he were me, he’d just monitor it.
What changed for me was my 2nd tongue biopsy that came back with actual cancer. The cells extended to the margin of the removed tongue tissue. So when that oral surgeon called me up with the cancer diagnosis Jan 2 2024 he wanted me to follow up with an oncological ENT there at Dartmouth Hitchcock to go back in an take enough tissue out until clean margins were found, that is no cancerous cells on the edges of the tissues.
I had done quite a lot of reading on this website forums and the educational material found here and elsewhere, and for all the years I was following various oral surgeons from Boston Medical Center and Dartmouth (my 1st Boston doctor moved to NYC) for annual follow ups, I had made my mind up that should a I ever find out a cancer developed on my tongue I’d be seeking care at the nearest and best Comprehensive Cancer Center I could find locally. And if my case ever turned into a complicated one I’d seek the best CCC Oral Cancer place in the country/world MD Anderson in Texas.
For me Dana Farber Cancer Center in Boston was very handy, and mine was a very early microinvasive cancer. My Dartmouth oral surgeon happily referred me to the specialist he recommended in Dana Farber, an oral surgeon who went on to do the general head and neck ENT oncological surgery. Fantastic doctor. All of mine have been fantastic.
So they re-read my pathology slides. Their pathologists agreed with the initial diagnosis. I met with the new surgeon like 2 days after the diagnosis, which was a happy Godsend of immediate availability. I think it was like a week for the pathology to be re-read. I think he scheduled me for surgery maybe before they re-read the slides, but it was not until like 40 days. So, I was a tad nervous, because at this point there was no indication I was cancer free (or visibly on biopsy clean margins yet).
My surgeon reassured me I was very well situated. This was still very early, and despite it being like 7 months between the new pain symptom to the biopsy that found cancer, it being microinvasive was still very superficial. No invasion near nerves was noted, nothing near vessels noted etc.…But he needed to go in and do a general anesthesia surgery of a (very) partial glossectomy. He was going to scope my whole mouth, and throat, look for anything else suspicious while I was out cold on the operating table. He did not plan on taking much more that the centimeter size original biopsy, and said I should have no long term loss of function or ability or any cosmetic issues in my case.
They just wanted to be sure the tumor did not extend into the surrounding tissue, and that there was no even more invasive cells outside the original biopsy.
So they took out about an inch by half inch section, that sutured up very nicely.
In my case no further cancer was found anywhere, but again dysplastic cells were still found, even to the margins (again, if I remember correctly, for sure dysplastic cells were noted, I may not remember the margin part correctly).
So now my treatment plan is for close follow up with the same surgeon, every 2-3 months. I will see him next Wednesday as a matter of fact. I’ll be asking him about a new white spot that doesn’t seem close enough to any of the suture sights to be scarring.
He did not order or recommend being ordered any further imagery in my case. No PET/CT or CT initially. I had some concerning bumps in my armpits I had worked up through my primary care, and I spoke with my surgeon about that. He ended up ordering a chest CT, completely clear, with a tiny granuloma in one lung, no evidence of cancer on the CT.
I don’t know to what extent the suturing techniques he used may cause additional white lesions away from the main healing scar, or if he will want to do a local anesthetic biopsy of that other area that is now white. A small sub-centimeter white oval, or leukoplakia is what my dentist found on the right underside of my tongue like 5 years ago that triggered this whole series of events. So, I know even non-sore lesions are something you want an expert to be focused on.
So, I say all that, so that hopefully you will take courage, understand that we are both in relatively great shape with very early cancers. Cancer is still cancer as some of the folks who have helped me here have said, it is still unpredictable and something you want to stay on top of, but you are very treatable and should have an excellent outlook.
I would encourage you to do your homework and consider if a comprehensive cancer center is available near you, and if you have one that is well regarded in or oral cancers. I’d imagine they’d want to proceed in a similar manner to mine.
They did not find any lymph nodes that were swollen or anything in my physical exam, and no other symptoms really so no neck lymph node biopsies.
My partial glossectomy recovery was not all that much worse than the biopsies. It was nice doing it under general anesthesia as there was no needle to the tongue, although my 2nd tongue biopsy was less painful than any other dental procedure with lidocaine I’ve ever had.
Folks that have substantial portions of the tongue removed have a much more challenging recovery and pain. For me I did have some lighter duty narcotics for I think about a week, maybe 2. Eating sucked but smoothies were manageable. I found myself not needing he painkiller except to eat…made eating bearable. Lots of popsicles and ice cubes, similar to what you experienced with the biopsy I’d imagine.
I’d recommend making a list of questions for your doctor. Gather your thoughts and try to organize the questions you have. If you have a family member or friend to go with you and help you prepare your questions and remember what the doctor said, that may be helpful. You can ask who they might recommend and don’t be bashful about asking to be referred out to a more advanced comprehensive care facility. I felt kind of bad asking my doctor to refer me to another system, and he was super congenial about it and totally understood. Not saying all doctors will be like that, but it is your health, and you have the right to seek expert care.
The way one my oral surgeons said it was , do you want to be seen every year, once a year by someone who sees like a handful of these tumors over their entire career, or someone who treats dozens of these types of conditions week in and week out.
I hope this is helpful. Sorry for the bad news, but in one sense there is a very big silver lining of the cloud to the specifics of our diagnosis, the very early stage tumors. That is the goal.
Mine was not base of tongue, and not
HPV related. There are all manners of other person specific things to take into account, your other health conditions etc. But again, take courage, seek out excellent care, and ask the questions you have to your doctors.
Field cancerization and further conversion to malignancies is also why I am glad I am now an established patient at a Comprehensive Cancer Center with a very experienced surgeon and whole army of cancer experts and technologies at his disposal.
Best wishes and I’ll see if anything else comes to mind I’ll get on here, and check back to see if you have further questions.
The forum isn’t as active as it used to be, but I am sure some of the admins and people who have been in the thick of the cancer battle for decades will reply in turn soon.
You should be able to click on my username and see my posts if you want more of my specifics. Most of my experience is in the “new symptoms and diagnosis” tab where I kind of have my mini-blog of what my biopsies said as I asked others on here what things meant and what they’d do etc.…
You can browse through others too.
As you read Do try not to psych yourself out though, some folks have had it very rough, but you are very well situated for very early intervention, and that is the whole goal. Early detection and eradication of the cancer disease preserving as much body function and quality of life as possible.
Best wishes,
Chris
