Hello Aldrmctchr,
Welcome to the forums.
Sorry you are having this lesion on your tongue with your ENT having suspicion of cancer.
My two cents would be if any of your doctors ever suspect oral cancer, and are not convinced the biopsy results are accurate, and they suspect a false negative biopsy, and are strongly suggesting another biopsy absolutely do it.
Even if this next one comes back negative, I'd keep pushing for a definitive diagnosis on why in the heck your tongue is swollen to the point it was closing your throat off.
An oncological ENT at a Comprehensive Cancer Center (CCC) would be ideal for future work up.
I see my oncological ENT surgeon next week again in Boston for follow up. If it were base of tongue, an oncological ENT surgeon at a CCC would be most experienced with the TORS (Trans Oral Robotic Surgery, if I recall correctly) techniques to deal with it in the most effective and best outcomes manner.
It could be they just missed the tissue that was malignant, or Lord willing, it truly is a non-malignant lesion.
But I would definitely want to be dotting my i's and crossing my T's, ESPECIALLY if an ENT is saying it looks cancerous to them.
More often than not you'll see folks on these forums frustrated by ENT's brushing off lesions as "not angry looking" and NOT being suspicious of being cancerous, and then coming to find out it WAS.
Because you mentioning doing something different like consulting with a surgical oncologist, I am going to assume you are not currently an established patient at one.
I would suggest you research your nearest CCC and give them a call and see about getting seen by their head and neck cancer team for a consultation, and your current ENT who is suspicious of cancer should be able to facilitate that referral if the CCC requires it.
Some of that may depend on your insurance situation, and where you live (assuming you are in the US, outside the US other Cancer specializing hospitals would be my recommendation).
You may be able to schedule an earlier repeat biopsy with a CCC, or they may suggest calling back after the results of the 3/27 biopsy. Thats like 6 weeks out by my math.
The waiting is the frustrating part. Even once I was diagnosed with a micro-invasive stage one tumor, oral squamous cell carcinoma, I think it was like 5 or 6 weeks for my CCC ENT partial glossectomy surgery to be scheduled, but mine was a very small tumor caught very early, as I was under close surveillance for a potentially pre-malignant lesion (epithelial dysplasia) from a white spot biopsy (leukoplakia is the fancy word for white spot) on my right lateral tongue for about 5 years.
But I think they triage even cancer surgeries. And if things change they can re-schedule for emergency surgery. So the whole time I was waiting, if I started having new symptoms (problems swallowing, speaking, breathing etc... I'd call the surgeons office back and let them know what was going on and they'd adjust accordingly, my tumor was small, wasn't changing quickly...and it turned out that the 2nd biopsy that found the cancer, seemingly excised all the malignant cells, as the partial glossectomy biopsy tissues just found more potentially pre-cancerous tissues, and no actual cancerous cells were spotted).
That's the next question regarding the biopsy report, did they note any dysplastic tissue? If so, that means those tissues are potentially pre-malignant, and you may want to be established at a CCC for close follow up as well.
Regarding biopsies, my first oral surgeon like 7 years ago, that did my first ever tongue biopsy that found the dysplasia insisted that the biopsy specimen be sent to a specific oral pathology laboratory, regardless of if my insurance covered that particular lab (BCBS did in fact cover that lab). This oral surgeon was an oral cancer survivor himself, a bone tumor in his jaw that his regular dentist found on annual X-rays, so I was like sure boss, whatever you say. Apparently he had experiences with bad results from other labs. The oral pathology lab he insisted on is one of the worlds best.
Since then all my pathology has been done at the CCC hospitals, and so far just more potentially pre-cancerous tissue was found.
So its very unlikely that any board certified pathologist is going to miss diagnose a pathology slide, there are issues with sample size and other issues that can also come up.
A specialized oral pathologist may be able to give more insight on to what IS causing the tongue tissue to swell up too, so that your tongue isn't choking you.
Keep your chin up, stay encouraged, keep doing your due diligence in seeking a definitive diagnosis from a competent oral cancer professional, and keep asking questions to you are satisfied you understand what is going on with your tongue, or at least your doctors know what in the heck is going on with your tongue and they have a wise plan for dealing with it.
Best wishes for a non-cancerous outcome, and one in which they can whip your tongue back into shape, or perhaps it recovers on its own.
R/
CQ
