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I'm 40, never smoker, did use alcohol, have struggled with HPV (genital) for 25 years, and developed a gnarly mouth which has been evaluated by the three highest rated ENT in my area all of which proclaim I have no cancer. It all began when I developed a mucous retention cyst four months ago which resolved naturally by removing spicy food but upon examining I saw a mess in my mouth: one paletine tonsil secreting pus, white patches bottom of inner cheeks, veins everywhere, pink patch of irritation tissue under my nasal passages back of throat. The most worrisome part of all this is it is all unilateral (one side) so had looked at which resulted in cyst removal that came back no cancer. I was no convinced as base of tongue same side very back remained swollen despite cyst gone, several lingual tonsils swollen...now for months. I had a legit lymphnode issue but they sent me to an allergist who gave me clarithromycin (rhinitis antibiotics) plus steroids which resolved the node. This week had a full Nasal endoscopy which the ENT proclaimed me cancer free but he would allow a CT scan if demanded, strongly against biopsy of lingual or removing my tonsils. I've not made the call for CT yet, many have said PET is far better, not sure if biopsy of lingual is even better or what.

My wife is adamant I leave it alone, trust the ENT, but I'm pretty textbook (unilateral, lingual, genital HPV, cobblestone with veins all through mouth, intermittent ear pain, all of which has gone on for months despite antibiotics). Should I let it be? Was you sign or diagnosis similar? Should I wait for pain or pronounce node?

Thank you so very much for your time. I understand this is not a forum of doctors, just looking for some thoughts from those that have been there...

Justin

Last edited by Jdouble7; 11-26-2022 07:30 AM.

Jdub
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Update:

Went to my 2nd appointment with one of my 3 ENT who did my 2nd nasal endoscopy which at the conclusion of he deemed me to not have cancer currently but could not confirm anything whatsoever. He saw and had concern about my unilateral lingual tonsil hypertrophy which he examined at length with the nasal endoscopy and by hand. He said he could not biopsy without putting me under at which point he would want to take my palatine tonsils as well which at my age has a 15% rate of hemorrhage and severe breakthrough pain for at least 7 days. My last ENT prior offered a CT scan but I have no taken him up on it, not sure if it would show anything or not.

Has ANYONE had a similar experience? Is the only answer really to wait for a lump? My mouth is an absolute mess, vascular chaos throughout, gross line alba looking formation along the cheek on my problematic side, my lingual tonsil has been inflamed on one side for four months despite antibiotics and antifungal. There is some new treatments that may offer less toxicity (DART by Dr. Ma for example) but they all REQUIRE being Stage 2 or better. My family is at ends with me, won't talk about any more now that 3 ENT has said nothing is there...im so depressed. Do I do the tonsillectomy?


Jdub
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You need a definitive answer to what this is. You should get the CT or MRI. Non invasive and will give them some information to work with that a visual scope will not. Biopsy of the tonsil is possible, or someone can just remove it, it is not a complicated or big deal surgery. Then it can be sent to pathology for definitive diagnosis. You likely do not have to have more surgery as the one ENT is describing. That lymphatic tissue may not even be involved. He sounds overly aggressive. I would get another opinion from another head and neck surgeon otolaryngology professional. And I would continue to be your own advocate for determining if this is something serious or not. These cancers get misdiagnosed, or diagnosed late too often, which if it is really cancer lets it prosper into something harder to deal with. You are your own best advocate. Please go get some concrete answers. Hopefully this is some benign issue.

I don’t think that these visual examinations you have had are going to be helpful. They are giving you opinions not based in factual evidence. Perhaps some of these ent’s are not head and neck surgeons. If that is the case they do not have the clinical experience to help you with this. I’m asking about that because they are doing everything but actually doing real diagnostic things. Throwing antibiotics and anti fungal meds at it when they don’t know what it actually is. This is a story we hear everyday, and my own diagnosis was delayed by similar doctors before I was finally diagnosed with a stage four tonsils cancer with mets. Anyone whose first inclination is to get out their Rx pad not even knowing what this is, is the wrong doctor to help you.

Last edited by Brian Hill; 12-04-2022 10:43 AM.

Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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So with your much appreciated and detailed reply I opted for the CT scan which came back negative. Dr. Gross and Dr. Lenkowski reviewed it and confirmed there is nothing there as of now except for a mucous retention cyst. Dr. Gross said he can remove it but it may not resolve anything and is a fairly significant procedure. Every single ENT admits that the anomalies throughout my mouth including the cyst on my palatine tonsil are not pathological or anything they can deal with. He said if he takes my tonsils and my lingual which requires resection of my tongue and their is no tumor then I'm at square one without any diagnosis and could still get cancer.

So frustrating, my mouth is a hot mess, but I guess there is nothing I can do. I showed Dr. Gross the study demonstrating early diagnosis of this is almost impossible but he was indifferent. He said he has seen HPV cancer countless times times including earlier in the day (someone had a growth from their uvula). There is nothing I can do now. I have been to the three most distinguished ENT in the surrounding 200 miles.

https://health.usnews.com/doctors/brian-gross-712313

https://health.usnews.com/doctors/paul-lenkowski-625308


Jdub

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