Hi everyone. I first posted a few months ago about my problem tonsils: http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=74926#Post74926

I finally got in to see one of the Moffitt-affiliated doctors that treated DavidCPA. It took awhile for my referral to happen. I wouldn't have been seen so soon if David hadn't put in a word for me. Thank you so much, David.

So, the USF/Moffitt ENT takes one look at my tonsils and says if he was in my situation, he would have them out and the sooner the better. He doesn't like how big both my tonsils are for an adult and he is particularly concerned about the blood I have in my mucus every morning so he wants to do an endoscopy at the same time as the tonsillectomy. I do have terrible acid reflux and inability to swallow (I regurgitate through my nose as the left side of my throat seems incapable of pushing food DOWN) so he can't rule out my esophagus or stomach as the source of the blood.

My referring ENT says don't do anything. He sent me to this ENT to confirm his opinion.

I STILL have hrhpv in that other location and a week ago, had ANOTHER bad pap (story of the last few years of my life) after one good pap earlier this year but that still showed hrhpv. Needless to say I have sworn off all even remotely sexual activity indefinitely. I can't believe all the care I have ALWAYS taken with my sex life didn't help one iota. Anyway, the downstairs lesion I had removed last year recurred so it's again back to the gyn-onc. I know that hrhpv in the downstairs cavity doesn't automatically migrate to the other cavity, but I engaged in certain activities that surely put the hrhpv in my mouth as well. There is just no test to confirm its presence orally.

I don't know how I feel about this...both ENTs say an adult tonsillectomy is torture. It sounds worse (more painful) than my neurosurgeries. I am moving to Houston right after Christmas so I would need to move on this asap (I can't take 2 weeks off in Houston).

Should I choose to have them yanked I don't know who to go to...my regular ENT is in town and convenient but this ENT is affiliated with Moffitt and sends all tonsils to pathology for some sort of slicing. I would have to ask my regular ENT if the lab in town does that. The huge difference in opinion is concerning. If there is nothing sinister about the tonsils I will feel really bad for having had ANOTHER unnecessary surgery (I had two neurosurgeries in 2004 that I should not have had...was led astray by doctors), be out 2-3 weeks from work and however much it costs. Can I have your thoughts please? Thanks so much.

Annie,

You know what I'm going to say...I would stick with Dr P at Moffitt. He put me under to find my primary and I thought I was going to wake up tonsilless but he found it at my BOT first. Lucky me, I guess but I was prepared to have them taken out and I'm twice your age so just get it done and lets hope for the best.

Was Dr P everything I said he would be?

R U coming to the restaurant tonight?

Is your inability to swallow related to these HUGE tonsils? Sounds like it would be to me. If I were you. I'd go with the opinion of the guy at Moffit rather than the local ENT who probably rarely sees cancer and rarely operates on adult tonsils. If there aren't cancerous, so what. I'd get rid of them before they cause more trouble.

Take care,
Eileen

I would get the tonsils out...and I would also take care of that acid reflux, you don't want to let that linger. Acid reflux can cause a few different problems.

best wishes

Thanks for all your input.

David, yes, he was everything you said he'd be plus a few more things! Lol. Though, I wish he would have smiled. Ok, so Dr. P never had to cut, right? I think for you the rads/chemo took care of it all?

I am not sure that I can make it all the way to Gulfport tonight. But if I choose to have my surgery at Moffitt, I know where I'll be eating before I go under!

Oh, he was very nice. He warned me not to skip my gyn appointments (never have).

Eileen, I didn't think the difficulty swallowing has to do with my huge left tonsil, as the ENT could see no obvious obstruction, but it is so much worse on that side than the other. He mumbled something about the "odd positioning" of the left tonsil causing it to appear bigger than the right when in fact he felt both were too big for an adult. At a minimum, chronically infected, but not overtly cancerous-looking though he seemed in a hurry to yank them.

Ray, yes...that acid reflux, I just wonder how much of my problems stem from the digestive stuff and not HPV/oc. Makes me kinda nervous he wants to do both while I'm under, is that possible? I mean, he is not a GI specialist, and the endoscopy goes pretty far down...to around the navel, I think.

Brian, if you are reading this I have a question for you. Your primary was on the tonsillar pillar, right? Did they remove that pillar? Both pillars? Neither pillar? I don't think he could make out the rough white patch on my right tonsil pillar but the lighting in that office left much to be desired. He will not remove any pillars because it interferes with swallowing (got enough problems with that as is). Thanks.

Side note: I don't want to alarm anyone (though anyone reading this board is probably already significantly alarmed), but the ENT mentioned sees a lot of tonsil cancers related to HPV. He didn't treat me like a hypochondriac at all nor question the possible etiology of my bulky tonsils. It's not considered rare anymore. But, the majority of ENTs still don't believe this connection including my local ENT.

My right tonsil in its entirety was burned off by radiation, along with other anatomical structures in my oral cavity. My surgery after all this was not intra oral, only necessary as a radical neck dissection.

So you do not have tonsil pillars on the right side at all? Sorry that question probably sounds very dense. I just want to make sure I'm reading right because this ENT won't touch my pillars.

I forgot my other question: since tonsillectomies never remove all tonsil tissue would it make future observation/screening more difficult? I only ask because my gyn says if a leep or other excision procedure of the cervix goes bad it causes future problems including stenosis, inability to sample the right cells, inverted tz, etc.

Thank you again.

Radiation damage and anatomical changes to your mouth can be quite radical. For sure the ENT would not choose this route using surgery. Many of the normal anatomical structures in my mouth are gone, for instance I have no epiglottis. Wasn't anything wrong with it, it was just in a very persistent beam of radiation that was on its way to somewhere else... I went through before IMRT so my damage is worse than most.

Tonsillectomies would not make future screenings any more difficult. My assumption here is the doc talking about cervical is referring to the fact that this would leave scar tissue on the surface. I have never heard of this being an issue in the oral cavity.

Nope no surgery for me other than what he took on the BOT primary which he told me after I woke up that my primary was so small he thinks he got it all when he took the biopsy. I has a sore throat for a couple of days and no one even gave me my ice cream that I had requested before counting backwards from 100 which I don't even remember 97.

We joke and kid around a lot now so if you want to see him smile do what he thinks professionally is the best course of action for you.

David,
Did your small BOT primary show up on a PET Scan?

I ask because my OC Unknown Primary could be Oropharynx (BOT as the suspected site) or Nasopharynx, but nothing could be found or showed up on PET/CT or HiRes CT.