Re: Ent dismissed lesion and fullness of tongue on Sca ChrisCQ 20 hours ago
Hello Sam,
Welcome to the forums.
I am doing a lot of reading between the lines in your short post, but...
It sounds like you have a white lesion on your tongue, they did a CT, found it asymmetric, and maybe swelling, you then were prescribed 15 days penicillin.
You make no mention of biopsy.
My initial leukoplakia (fancy word for white lesion) on my right lateral tongue found by my dentist, who INSISTED ADAMANTLY that I come back in 3 weeks for a quick visual recheck, and then INSISTED I go see an oral surgeon.
Oral surgeon did not think much of the small end of a pencil, pencil eraser sized (maybe a tad bigger, smaller than a dime though) white spot, but said if it was still there in a few more weeks he'd schedule biopsy, only because that is the standard of care for a non-healing white or red lesion on the tongue or mouth not otherwise DEFINITIVELY identified as something benign, which usually you can't do without a biopsy anyway.
My initial biopsy came back, and the oral surgeon was greatly surprised that the innocent looking little white spot came back as having shown moderate epithelial dysplasia out to the borders of the biopsy sample.
From there he referred me out to another oral surgeon who was specialized in oral cancers for annual follow up, as moderate epithelial dysplasia is a "potentially precancerous condition".
I was pretty much committed to annual follow ups for life, just to have a well trained expert keeping tabs, in case they should ever spot something before I did.
About five years after this annual follow up I then noticed the area developed a small pimple protrusion, pretty much right where the old scar was, called my 3rd Oral Cancer Surgeon (actually used patient portal to send text message), and he set up an appointment to see me half way through my regular annual visit schedule. We did not biopsy it again right away, as again it LOOKED like nothing angry or scary. Surgeon could have done it then, I should have said go ahead and re-biopsy it then, even though he said he would be doing it just to reassure me as he did not think it was anything to be concerned about. I did not have my wife with me to drive, and was unsure of what kind of shape I'd be in. I just wasn't expecting to do it in the office, same day, as my other oral surgeon scheduled it out in a big process.
All my cancer oral surgeons have now made it clear to me that at any point they can knock out a quick biopsy on demand at any of my follow up visits.
Anyway we waited 3 months to see him again, with the caveat if anything changed he'd get me in ASAP to biopsy it right away.
It was a little more sore the following couple days after he had prodded it with a cotton swab, and I decided no matter what on my next visit I'd ask him to go ahead and re-biopsy that pustule.
It came back microinvasive squamous cell carcinoma (and more dysplasia).
The margins were not great, so he wanted me to see an ENT surgeon to schedule a follow up partial glossectomy and throat scope, and I asked to be referred out to another system at another comprehensive cancer center, with a stronger oral cancer/head and neck cancer program and it was closer drive.
The pathology on my partial glossectomy came back finding no further cancer, but more dysplasia. The CT and MRI study (was for my brain for an unrelated issue, my ENT surgeon took a gander at that before the partial glossectomy, but it wasn't focused in on the tongue and throat) for me was after they found the cancer on a follow up white spot biopsy.
ALL OF THAT TO SAY.....Biopsy is the gold standard.
If that white lesion has not been biopsied by this point, if I were you I'd be demanding a biopsy (again unless they've looked at it and said it was something like your rough tooth crown rubbing on it...and even then I'd still probably ask about biopsying it).
None of the other tests they can do can with the same accuracy and precision tell you what on earth is going on in that tissue, apart from a board certified pathologist staring at the cells in a microscope with all his fancy stains and processes.
Most leukoplakias are not dysplastic.
Most dysplastic leukoplakia's do not turn into cancer. Now that I've been diagnosed as having developed cancer, I will absolutely being seeing a specialist annually, even after my 5 years of "no further evidence of disease" follow ups.
But I am one of many folks on here that kept drawing the short straws.
Take away here is you are your own health advocate (or need to be).
I've had a few dentists, and oral surgeons over the past 5 years say it was nothing to worry about....
That ALL changed when that pathology report came back with the micron invasive squamous cell carcinoma.
Found very early, which is what the whole point of all of this is, if you have a high risk lesion, or even one that just might be, to be vigilant (without being paranoid) and following up.
If you have not had it biopsied, you can't know if it is dysplastic.
Regardless, so long as you have it, keep close tabs on it, take pictures if you can, and just pay attention. If anything changes, keep calling back to your doctor.
If they can't explain, keep asking questions.
I hope the above makes sense, and may help you ask some questions on your path forward as you speak with your doctor(s).
Best wishes, and good luck!
