Though I’m not sure anyone is following this thread... I decided to book an appointment for a 2nd/3rd opinion. I think ENT 1 and 2 are basically playing a “I agree with ENT 1” and vice verse. I know there is more than size when evaluating lymph nodes for possible metastasis. The report doesn’t say anything about that. I just went and grabbed my scans. Unfortunately they are on a disc so I guess I won’t be able to see them. The report is identical to the one ENT 1 gave me today.

I’m just concerned about the dx of reactive node and chronic hypertrophy of tonsils because I don’t have a history of chronic tonsil issues. I had a bad sore throat in September 2017 and none since. I had strep throat in April of 2016. Prior to that I hadn’t had any issues since I was a kid. As a kid, I think I had strep once and to tonsillitis once. This is in contrast to my brother who had chronic tonsillitis and had his tonsils removed as an adult.

The ENT said that if the radiologist was concerned about the nodes, he would have recommended an US or biopsy. I know I shouldn’t judge someone who has that expert title but the radiologist is a relatively new grad which makes me nervous. The new ENT I’m seeing next week has good reviews and is not affiliated with the same practice. I really want to feel better about this but now I feel this enlarged node ALL THE TIME! I used to have to search for it and now it’s just right there on my jaw.

Still reading and following ... just been dealing with migraines!

Go ahead and keep your appointment, then let it rest. And don't poke at the sore area, as that WILL keep it inflamed. (I hate how that works against us!)

You know, I just re-read the part where you mentioned clicking ... I had the weirdest effect coming out of anesthesia from my recent hip surgery. When I swallowed, I'd hear this horrible click noise in my left ear ... that's not my cancer-affected side. I was also still on oxygen for some stupid reason, and they insisted it was just some reaction to the anesthesia, something about air pressure. I did NOT believe them, especially since I'd felt the pressure was too much going under ... I was sure they'd burst an ear drum or something, and I demanded a doctor to come look at it. The upshot was that they still insisted it was a pressure thing, and that I had some issues with ear wax. I do not get how that would work, and my right side (that is missing lymph nodes and should have more drainage issues) would have been the likelier candidate for such issues, and nothing they did made it feel better. I was highly annoyed.

Eventually they let me ditch the oxygen thingummy. And the noise went away. Somehow, the breathing air pressure really WAS messing with my ear ... not the way they thought, but definitely it was connected! Go figure. So if you're dealing with that when swallowing, even if your ears look fine, it definitely could be a pressure or allergy thing. I never would've believed it till that happened.

The stories you read here of missed diagnoses are really fairly rare in the big picture. You've got to keep in mind what a small subset of the population this forum is, and then what a smaller subset the missed diagnoses are. (And the subset of patients who find this site, and all that.) People share them because they aren't all that common, so it won't happen to others ... but that doesn't mean it will happen to you. No, I'm not a doctor. Just rooting for you. ((hugs))

Thanks KristenS, sorry to hear of your migraines. I hope you are on the up and up.

Right now I’m feeling pretty worried... honestly, the CT did nothing to alleviate my anxiety. Confirming the presence of “prominent” lymph nodes only has me more worried. It’s as if I was expecting the scan to say “nothing to see but normal anatomy and normally size lymph nodes.” It seems that “prominent” is synonymous with “enlarged”. And the radiologist’s report stating that they are “presumably reactive” is not reassuring. My ENT made a statement to the effect of “they have criteria they follow and if they are at all concerned, they make recommendations for further testing... they have to cover themselves from being sued, ya know?” Then he pointed to the final statement that says the ENT should provide follow-up care. He said “see, that’s how he protects himself in case he’s wrong.” Maybe I misunderstood but I felt like he was contradicting himself.

Someone once told me that if a radiologist reading a mammogram had even a smidgen of uncertainty that they might be looking at something that could be cancer (like 7% or less was the number), they would recommend US and/or biopsy. I don’t know what/if there is any similar criteria in these situations. I wish my ENT had explained to me why an US or biopsy wasn’t necessary in this case. I keep hanging on to 9mm being awfully darn close to the 10mm cut off. Is the suspicion that it’s just reactive based on the size alone? That’s how the report reads. Doesn’t a CT show more than that? I thought it showed composition and shape which are also important. None of this is mentioned in the report.

KristenS, you make a really good point that I have thought about many times myself. People who have oral cancer are a small subset and people who post on boards are an even smaller subset and therefore “missed cases” are rare when looking at the rate of occurrence and the small subsets they happen in.

I just wish my symptoms could be explained better. I’m afraid there is a big note on my file that I have anxiety and just keep smiling and telling me I’m OK. TMJ is the only suggestion that’s been made and I’ve not refuted it but it doesn’t explain every symptom. I’ve had issues with my ears in the past, though never unilaterally. Mainly, pressure issues. My ears click when I swallow lots of liquid and sometimes when I chew (as does my jaw), I have big issues when I fly... during take offs and landings my ears feel like they are going to explode. Not sure if it’s related but I also struggle with motion sickness which I’ve heard can be related to the inner ear. I’ve had issues in the past with impacted cerumen but don’t use qtips as an adult within the ear canal. No issues were noted with my ears by either ENT.

Still feeling neck fullness on the right side today. Haven’t felt the popping sensation (yet) and I told myself I’m not going to feel my lymph nodes today. Trying my hardest to curb my worry until my next visit next week.

Hi! Most, if not all, of your symptoms can be explained by a combination of TMJ and allergies (here's my "I'm not a doctor" disclaimer again! LOL). I know that for me, chronic allergies can sometimes flare up into an "almost cold" where you aren't quite sick, but your immune system is still working harder than it usually does, resulting in sore throat, swollen tonsils, etc. I have also had TMJ and that can cause a lot of ear pain because of the muscles pinching nerves, etc. The sore throat could be post nasal drip or an effect of the infection that you might be fighting off. Allergies can cause swollen tonsils too, and because the body is not always perfect, the tonsils don't always react perfectly symmetrically.

So, again, keeping in mind I'm no doctor or any kind of medical professional, just based on what you have reported in these posts, I think you are safe to stop worrying. I think the ENT is right in saying that the Radiologist is going to cover his butt by recommending more testing if there was anything remotely suspicious that he could get sued for missing. You mention his recent status as a doctor as reason to suspect him of being cavalier about his findings, but I would argue that his "new doctor" status could make him MORE cautious. Who wants to start a career by missing a cancer diagnosis when all he has to do is write "recommend follow up testing"? Also, doctors don't have to pay for the tests or go through the procedures, so they have no reason to NOT recommend extra testing. So far, all the doctors have felt that your symptoms are explainable by a combination of TMJ and allergies. I know that I have had similar symptoms with TMJ and allergies as explanations as well, so that is anecdotal evidence to support your doctors' opinions.

Although I have had tonsil cancer, it was unrelated to the other symptoms and much later. Years later. In fact, when the cancer was advanced enough to show symptoms, the cancer symptoms were very minor and barely noticeable. In fact, I didn't even recognize them as symptoms (every other week or so I would swallow something "down the wrong pipe" which I didn't realize was a symptom until a doctor asked about it specifically. I only knew something was wrong because one of my lymph nodes (just one) swelled up overnight. It felt like a dried navy bean under my jaw. It wasn't sore at all. Not even a little. No pain at all when I poked at it. I ignored it assuming it would go away but the next day it was the size of a dried kidney bean. Day after that, an almond. A week later when I was at the ENT's office it was as large as a brazil nut and visible to everyone who looked at me. In other words, the node grew quickly and did not stay small like yours are doing. Not to say that other people don't have different experiences, just some anecdotal stuff to give support to your doctors' opinions.

I think the doctors keep asking about lymphoma because I believe your symptom list is more compatible with lymphoma cancers than with carcinoma (HPV) cancers. I think the HPV ones often sneak up on you without a big list of symptoms like you have. The lymphoma ones are more often from smoking/drinking and more likely to come with the sore throat, etc. that you are describing.

Definitely keep your July appointment. In the meantime though, consider calling the doctor that you liked best and explaining that you just don't feel satisfied that they have fully explained away the possibility of an HPV related cancer. Tell them that you have symptoms that concern you and that you have had HPV in the past and you just need someone to really look into that aspect of things. I know you were just at the doctor's office, but you aren't satisfied with their explanations and you deserve to have peace of mind. That's part of their job. One part is making sure you are okay (and treating you if you aren't) and the other part is making you understand your diagnosis and giving you the confidence that they diagnosed you correctly. Hopefully they will talk to you over the phone, but if not, then make an appointment so that they can really go over everything with you. That's my suggestion. Going over everything with one of the doctors that has seen the CT scan and being very frank and detailed about your concerns and symptoms can help them to understand your concerns and should help you to feel like they have had a chance to fully consider everything from all angles. Once that happens, if they are still telling you not to worry, then you should officially stop worrying.

Still keeping my fingers crossed for you, but I am feeling better after reading your posts. It sounds like all your doctors are feeling confident that you do not have tonsil cancer, so I have great hope. Make that call to your favorite doc and make them go over every detail. Then keep us in the loop if you would. I know I don't know you, but I still care (as I'm sure everyone reading your posts does)!

Rabbit,

Thanks again for your thoughtful response. You make all excellent points. My anxiety is its own beast and though I’m making efforts to try not to let it run with my thoughts, it’s not easy.

I’m not a stranger to allergies and maybe the reason I’ve been dismissing them as a possible cause is because I’m used to the “runny nose”, “stuffed up all the time” type allergies. Maybe allergies evolve... I know my dad has tough allergies and his have gotten worse through the years. He sometimes indicates he’s suffering when he seems fine to me though I know he takes lots of medications for them. And TMJ dysfunction is absolutely on the table... prior to all these worries, I’ve always suspected that that is an issue for me. I’ve never been able to open my mouth very wide and have always had pain when I’m chewing something tough for a long time, had to quit chewing gum and catch myself clenching my teeth many times a day.

And I know I was being unfair to the radiologist. I can’t assume that his lack of experience would influence his attention to detail. As someone who used to analyze barium swallow studies (and was pretty awful at it), I used to find things “wrong” all the time that weren’t because I was afraid of missing something.

I’m definitely going to take a list of questions to my ENT on Tuesday (this is a new one) and then on 7/15 I’ll have my follow up questions for the ENT who ordered my CT.

One thing the ENT said to me the other day that I forgot to mention was that sometimes reactive nodes can take 3 months to go down... has anyone ever heard of this? On other boards I read personal stories of folks with nodes that had stuck around for a year or close to it and when they finally had them looked at they were just reactive nodes that were permanently that way. I also found an account of someone saying his nodes had been swollen for a decade. And others who had really large ones that were removed, biopsied and determined to be reactive... and old. My point is, I’m not sure when these nodes appeared. I didn’t feel them until about 3 weeks ago but I was looking for abnormalities when I found them. A simple node check on myself doesn’t reveal them, I have to dig around for them. Who knows if I’ve had them since that time I had bad strep in 2016? I’ve lost about 60 lbs since the beginning of 2018 (intentionally) so undoubtedly the he structure of my face (in terms of fat and skin elasticity) has also changed. Okay, just wondering out loud here about things I don’t have answers to.

I’ll try to hold off for any more posts until after my appointment on Tuesday.

Tomorrow I go to see yet another ENT.

I’m going on nearly 2 weeks of antibiotics. The bilateral nodes don’t seem to have changed in size. Still pea sized, under my jaw on each side and move around a bit. Pretty firm. Found a bump or ridge behind one of my ears, in the level 2b area. Painless, hard, doesn’t have apparent margins but I don’t feel something similar on the left.

Went to the dentist and asked him to look at my tongue. He doesn’t know what I’ve been through but noted more lymph tissue in the area of my lingual tonsil on the right. Of course I accidentally but my tongue in that area earlier today so now it’s bothering me. Otherwise, throught hasn’t been overly sore... just some pangs here and there... same with the right sided ear pain. The popping sensation isn’t really happening anymore but neck still feels full/tight.

Wondering if I’ve been chasing the wrong rabbit because what initially brought me to the ENT was the feeling that something was stuck on my tongue right around the area of the anterior 2/3 meets the base of tongue. Feeling around, I don’t know what it should feel like. It seems bumpy with a greater concentration of bumps around midline. It’s not painless but does smell/have a discharge. I brush my tongue during all brushes, drink water and just had a dental cleaning. I do have post-nasal drip and clear things out a few times in the morning. Course I’m worried now it’s base of tongue while I’ve been focused on the tonsil.

Given that I’ve had a CT scan less than 2 weeks ago. What more can be done at this point? I’m hoping to be scoped tomorrow. Last time I was scoped was 6/3. I also had an upper endoscopy a couple of weeks ago - that was by a Gi, would he have seen anything abnormal with the base of tongue? Does anyone else feel their pappillae on their tongue? I know what they are but I feel mine... like every time my tongue touches my upper teeth move my tongue around I feel them. I never did until about a year ago. They are quite prominent to look at. I keep worrying they are more than that. My hygienist said “cancer looks much different” my dentist concurred. Should I may an oral surgeon appointment? Should I ask the ENT to do a biopsy of my nodes? Would it be back tracking to have an ultra sound done on the nodes since I’ve already had a CT?

I’m crossing my fingers for an ENT tomorrow who takes my concerns seriously. I’m not suggesting others haven’t but I’m disappointed that none have explained or explored what could be causing my persistent symptoms. TMJ was thrown at me but I have literally no jaw pain and the ear pain happens out of no where. And it’s a deep, internal pain... not pain coming from where I expect TMJ ear pain would come from.

Would another radiologist ever take a look at my scans and write up a report with more detail. Mine just said “several prominent lymph nodes... presumably reactive”. It doesn’t tell me how many, where or why they are presumed to be reactive other than because they are below the size believed to be pathologist (10 mm) my largest is 9mm.

Sorry, just asking all these questions out loud to organize myself for tomorrow so I don’t leave wishing I had asked more questions.

I would say, if it's not cancer (and it does sound like it's going to not be cancer), then ask them to tell you what it IS. Don't focus on chasing one particular diagnosis, because you're going to fret too much, and they'll take you less seriously. Do insist that they keep searching for AN answer, whatever that answer may be. It may very well be TMJ ... that can behave very oddly, and nerve pain can come out in odd places. But it might not ... it could be a thyroid issue, if you're being treated and not getting better. It could be anything. Doesn't have to be cancer. Hopefully it isn't.

I've had a few where I had to be persistent to get them to listen and take my concerns seriously, when things were beyond my primary's experience. (He's a great listener ... we need more like him.) I've 'fired' a few specialists for not listening or not considering other options that were more likely than what they had as preconceived ideas. (Those tended to be mental health specialists, alas, or obscure pain specialists.) My guesses weren't always right ... but answers were worth fighting for. An open mind helped, but I did stand firm on finding some sort of answer.

((hugs))

Any answers yet? Still checking in on you!

Hi Cooper! How did your appt go?

Hi!

The appointment was fine. I liked the ENT... she had a very kind manner about her and showed me my scans. She also did a scope and reiterated that she didn’t see anything in the throat that looked suspicious. She did note the size of both my lingual and palatine tonsils and assured me that while they may not seem symmetrical on visual examination, they often can hide and appear symmetrical on a CT (which they did... appear symmetrical and bilaterally enlarged but not significantly so.)

She was a little surprised by the long course of antibiotics I’ve been put on. She didn’t say she disagreed but just did an “oh? Interesting.”

I left feeling a bit reassured but not so much in the sense that I still have the swollen lymph nodes. I actually just found another one... on the right side (the side I worry about). It’s small... I’m not sure if it’s been there but it’s the first time I felt it. It’s close to the other one on that side so I think maybe I did feel it this week but confused it with the other because I thought “wow, I think it’s getting smaller.” Then realized that it wasn’t. She didn’t offer up much of an explanation about that lymph node swelling... just that they don’t investigate them/or consider them suspicious unless they are 1.5 cm or greater in size.

I go back to the ENT who ordered the CT on Monday 7/15. I’m going to ask about the lymph nodes I felt and if they were on the previous CT. So, I’m really just as worried I guess, all symptoms are still here. Ear pain on right side only... very minor throat irritation, swollen feeling on right side of the neck. The only thing that I haven’t been experiencing is that popping sensation.

I want to just move on and enjoy my life but it’s so stinking hard right now when I don’t feel like I have any answers for these swollen lymph nodes (3-4 palpable under the jaw... 2 for sure on right, 1 definitely on left, possibly 2.)