Hello Sequoyah,

Welcome to the OCF Forums.

Sorry to hear about your recent unexpected cancer diagnosis.

Sorry to hear also you had an oral lesion that did not heal in 2-3 weeks and did not know to get it biopsied sooner.

This point going forward, any lesion you have in your mouth that does not heal in 2-3 weeks, the standard of care is to get a biopsy to rule out cancer. Not to beat a dead horse, and you can't do anything about it now, but 6 months is way to long to wait for an oral lesion to heal, unless there is a clear reason for it not to (say rubbing dentures, or dental appliances, and even then you need to be closely evaluated and likely biopsied, as chronic irritation from such things is thought to be a potential trigger for potential development of oral cancer).

I say that in case you ever get any OTHER lesions in your mouth, if they don't heal in a few weeks, be sure to insist on scheduling a biopsy, even if a dentist tells you like I was told by my current dentist "oh that's nothing to worry about....". I had a younger dentist who found the original pre-cancerous tongue lesion about 5 years ago who very seriously instilled in my a healthy respect for being diligent in following up on this white lesion. She was great, but left this dental practice. My current dentist, who my oral surgeon asked that I see before I made an unscheduled follow up (I was on an annual follow up screening schedule, until things progressed/changed, then it was understood I'd contact his office for an earlier appointment and/or biopsy), evaluating me for the sore spot on my tongue near the pre-cancerous lesion biopsy scar, said something to the effect of "oh, that's nothing to worry about").

It was a tad awkward at my next regular dental checkup when they asked about medical history, and I said yeah, now I have oral cancer on my tongue, you can update your records with that.... She meant well, but was under-educated in that regard. The first dentist, STELLAR, this other one, she's fine with cavities and what not, but should stop telling people non-healing oral lesions are nothing to be concerned about....

I had a pre-cancerous white spot on my tongue that was biopsied shortly after my dentist found it. It was pre-cancerous, leukoplakia with moderate epithelial dysplasia.

I was followed closely annually for almost 5 years by cancer specializing oral surgeons and a sore, very minor, very subtle appeared. That was biopsied and found to be cancer.

I'd imagine you will be seen by an cancer specializing ENT surgeon, hopefully at a Comprehensive Cancer Center (CCC) (see https://www.cancer.gov/research/infrastructure/cancer-centers/find ).

I was referred out to a Cancer ENT surgeon after my oral surgeon (cancer specializing one too) called me with the malignant biopsy results.

The ENT surgeon did a very partial glossectomy as my biopsy margins were too narrow.

I too had not a single risk factor, besides perhaps I used to use an alcohol based mouthwash, I guess there is some evidence that may lend itself to irritating the oral mucosa and possibly dysplasia, which is a "potentially pre-cancerous" condition, which in my case DID develop into cancer.

My lesion was also on the side of my tongue, right side in my case, about halfway back the length of the oral tongue.

My pre-cancerous lesion was about the size of a pencil eraser. It was just a white oval lesion, with no pain.

My cancerous pustule like eruption that came like almost 5 years later, was about the size of the last generation wired headphones plug jack, what is that like 2.5 mm I think. The surgeon took out a larger piece of tissue about a 1 cm, if I recall correctly, in both biopsies.

I met with a CCC Cancer ENT Surgeon I think the day after my oral surgeon called my with the biopsy results finding the cancer.

I was triaged in quickly, and they ordered the pathology slides from my other hopsital's pathology for review.

In my case surgery was not scheduled for like a month, but mine was very small, and lower risk.

Because it was so small, I did not even have a PET/CT prior to my partial glossectomy.

Mine was sub-centimeter and was just past being carcinoma-in situ, and had just barely penetrated the basement membrane of the epithelial tissue layer into the muscle and other tissue layers below the "skin" of the tongue.

So my surgeon did not think a neck disection or even a sentinel lymph node biopsy was indicated at the time of the (very) partial glossectomy, nor a PET/CT. He ended up taking a piece of tongue out about an inch long, a cm wide, and I have no idea how deep, not very. He said I would have no lasting defect in speech or eating, would fully recover in about a month, be out of work a week or two. I think I was home a week and some change. More visible stitches than the biopsies. Popscicle diet. Mine was a day surgery. Neck dissection or sentinel lymph node biopsy I'd imagine you'd be at the hospital a good bit. Or if they need to take more tongue.

I am about 1.5 years out of my cancer surgery, had a PET/CT this September, a few armpit lymph nodes showed up on the PET/CT and some minor jawbone lymph node activity, that the radiologist deemed "likely reactive".

Armpit lymph nodes were needle biopised, no cancer found there. Recurrence is always a concern, especially as my partial glossectomy found no additional cancer, but did find more dysplastic tissue ("potentially" precancerous)

If you are able to become a patient at a Comprehensive Cancer Center, I'd strongly encourage you to seek out treatment there. You'll experience the best level of care and integrated approach, and more apt to find experts with extensive experience treating your exact type of cancer.

If you end up having some exotic form, MD Anderson in TX is the top of the list of CCC.

Another member mentioned HPV testing I think.

I asked my surgeon about that, and he is of the school of thought that is more of a base of tongue cancer thing.

I keep forgetting to show him the photo in the oral pathology textbook written by the oral pathologist who did my initial biopsy that shows a lesion on the side of the tongue that was HPV associated Oral Squamous Cell Carcinoma (OSCC) upon detailed pathological testing.

So apparently lateral tongue OSCC can be HPV related but it is more commonly associated with base of tongue cancer. Seemingly this is an area of changing knowledge as well.

Oh, when they did the partial glossectomy they also did a direct laryngoscopy looking for any other tumors in the base of tongue area or anywhere in the pharnyx/larnyx, basically all the ENT cancer areas gets visually scoped and anything suspicious gets biopsied at the time of the partial glossectomy.

If your tumor was deep enough or advanced enough, the first place it is apt to spread is to the your lymph nodes in your neck.

If it is borderline deep they may just take a few lymph nodes, if the concern is greater a full neck dissection is apt to occur.

That will give your treatment team critical information to plan how to proceed with your treatment.

If superficial of a tumor, no chemo or radiation MIGHT be recommended. If they find cancer in a lymph node a more aggressive approach will be warranted.

Even if minor and superficial invasion is found (fingers crossed for you), careful close follow up to detect an recurrence EARLY is key.

Even if the news is NOT good, do not despair.

There are plenty of people on this forum who had their initial diagnosis at advanced stages with lymph node spread. Treatment has advanced quite a lot.

One day at a time.

I hope you have a good support network of friends/family to assist you as you cope with the news and treatment.

I hope and pray the pathology reports bring as good news as you can hope for, and if not, you find an excellent cancer team to put your mind at ease and move forward as best as you can in your particular situation.

Best wishes as you continue on, keeping living and doing the things you enjoy as you embark on this experience.

R/

CQ