Hello
A worried 38 yr F here.
I have been having pain and irritation in my lingual tonsil area for over 4 months. It is not sore throat. Just very raw irritated feeling. It is almost constant.

I have been scoped 3 times by ENT from UCLA and 2 times by ENT from Cedars Sinai (both large leaders in ENT neck cancers). The third time the ENT was so thorough, did a very detailed exam incl neck and palpations.
Then kind of said again that my lingual tissue is irritated
due to GERD or post nasal drip. And that he feels it will be complete waste to send me to CT scan and he cant bipsy because he cant find any irregularity. The lymph tissue is enlarged, but not a single spot stands out to biopsy.

Specifically, he explained that HPV+ usually presents with a cystic neck mass in the jugular level 2 or 3, and the tumor is so tiny, it typically doesnt cause pain.
If pain, then the tumor is larger, hence, you almost always have lymph node above 2cm on your neck.
Do you mind sharing whether any of you had nasty pain in the lingual tonsil area as presenting symptom?

I am heading to Oral cancer expert in a week but my mind is restless. So hard to ignore 1. 2 highly trained doctors or 2. the pain that doesnt go away

Are they even doing anything for the pain? GERD can be treated, for example, so if that's it, they would hopefully give you suggestions or refer you to the proper specialist to give you suggestions.

I'm not clear why a CT scan would be a waste ... aren't they meant to pick up the things doctors can't see for themselves? Especially the ones with contrast? And if it would ease your mind, that's not a waste either.

The HPV statement also confuses me, as it can pop up in other locations in the oral cancer areas ... was he meaning just in the area you were having difficulty with, that's where it would be likely? If so, he may be right, I wouldn't know about that. But if he was saying that's the only place HPV cancers crop up, that's not quite right.

Judging by the number of queries that pop up here, it seems that most issues don't end up being cancer, which would be fantastic for you. But you're right to keep asking and checking, because you are aware that something isn't right with your body, and you do deserve to find answers and get it treated. I hope your appointment goes well and the new specialist listens and understands.

Nobody here is a doctor; everyone's patients or caregivers, so nobody can diagnose or offer treatment suggestions ... just their own experiences. There's some real whizzes here who've been through a ton and collected a lot of knowledge from their experiences. They might be able to reassure you further. But you're on the right track by continuing to see an answer for the pain. ((Hugs)) and good luck with that.

Thanks for the nice response. My doctor thinks HPV cancer happens only in the lingual tissue or tonsils, and it most often presents with a neck mass. All other cancers present with either ulcer that doesnt heal or change in color, etc.
He also said that cancer in BOT is firm. Often not seen but can be palpated, like a popcorn kernel. That is unless its very small...of course. Also he mentioned something about tongue movement restriction, etc.

I guess the CT is a waste because I have had various CTs recently for other issues, and radiation is a problem. In other words, he just doesn't feel the need to order CT scan.
I guess doctors do have a level of suspicion and he said I will not order a CT scan for every patient with sore throat.

But...I have pain and its been there 4 months. I can clearly see that my lingual tonsil is enlarged. So I keep worrying and visiting doctors.

Hi Julie.
I hope this turns out to be something very treatable.
I think a lot of HPV+ patients, get the Node lump, without having any pain whatsoever, including the lump That was my experience. Based on a PET scan, I had my lingual tonsils removed, but the biopsy was negative, and the primary was never found.
Not that your symptoms preclude a lingual tonsil carcinoma, everyone's history is unique.
Hopefully your ENT suggested or prescribed something to treat the GERD? If that clears up, at least you could have peace of mind that cancer is less likely.
For me, years ago, and my daughter, recently, the ENTs said to do a protocol of an acid reducing medication, such as Omnepozale. But it's good you are being proactive and doing your research, but the worrying doesn't help, you will see that a lot on this forum.

Just an update. I saw the head of oral cancer surgery in UCLA yesterday. I do not have cancer. I do have a very rare thing where the hyoid bone is pushing my tongue a little. I do have severe acid reflux as demonstrated by one of the studies done. And I will be tested for Sjorgens, a chronic disorder that causes irritation and dry mouth.
My lingual tonsil tissue is large, irritated, and asymetric...right size much bigger.

Overall, while I feel incredibly guilty to post here when many people actually face cancer right now, I just wanted to share that again, dr Chhetri confirmed...HPV+ most often presents with mass in the neck and no oral symptoms. When it progresses further, there is some otalgia (ear pain) or chronic sore throat. I am sure there are people with other symptoms, but this is what usually triggers suspicion.