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#198522 06-17-2019 05:25 PM
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Hi,

I’m 35, female. I’m guilty of using google to diagnose symptoms but I’m also petrified at this point because I can’t find another reason for what I’m experiencing. I’m also having some “odd” symptoms that I cannot find any explanation for and was wondering if anyone with a diagnosis has ever experienced them.

In March I noticed some bumps on my tongue, went to ENT who scoped me, said he saw “pustules” on my tonsil and applied some pressure which causes some funky tasting stuff to be released into my throat. He prescribed antibiotics. I wasn’t experiencing any pain in the throat. I didn’t take them. Dentist did oral cancer screen and didn’t see anything on tongue of concern. I felt relieved.

In May, I started experiencing this strange popping sensation in my neck when I turned my head to the left. Not painful, just odd. Not audible, just a sensation. It happened maybe a half dozen times a day. Not every time I turned neck but often enough. No pain. Starting inspecting neck regularly and noticed some tightness in my muscle and pain when I applied pressure so I went to see PCP. She gave me neck exercises and sent me home. Dissatisfied, I made another ENT appointment.

I took a look in my throat and saw that my right tonsil is larger than the left. It’s certainly not huge and of normal color (as far as I can’t tell). ENT said possibly TMJ. But I don’t have jaw pain... She felt for nodes in neck, then scoped me. Also agreed right tonsil was larger but looked normal. I mentioned bleeding (there was blood in my saliva after hitting the tonsil with the waterpik) and she said that wasn’t uncommon because it’s a vascular tissue. Mentioned my mild but persisting ear pain (it’s not constant but is daily), likely TMJ she said as no sign of infection. Said she would order a neck CT since I still seemed worried. I asked her if she felt that was necessary. She said she would cancel it if it was going to give me more anxiety. I asked if she thought the tonsil should be biopsied, she said no.

That was 2 weeks ago. Since then, I’ve discovered 2, possibly 3 nodes in my neck. Two are under jaw (bilateral) and have to sort of be “dug” out of the skin. They are moveable, I guess, not sure I understand the terminology. But rubbery? How does one distinguish? How can one tell the difference between rubbery and hard? Seem to be pea sized. Non-tender. The other one is just behind the angle of my jaw. Moveable. Can’t really decipher the size and also unsure if I’m in part touching a salivary gland? I feel something similar on the left side but doesn’t seem as big. Again, I sort of have to “dig” under my jaw to find it.

Went back to PCP as wait for ENT is weeks. She was visibly annoyed. Said “why are you so worried about head and neck cancer?” “You don’t smoke, you’re not a heavy drinker.” Then under her breath said “or have had a lot of oral sex partners.” To that I replied, “yes, I have”. I’m not sure how many honestly but probably a half dozen or more. I had HPV on a Pap when I was ~22. All subsequent paps have been neg, including the one I had in May. I had the HPV vaccine when I was 25/26. But my positive was before that, obviously. She seemed agitated by my response and said “well all you can do is call and try to have your CT moved up”. Then I cried and she told me to meditate or do yoga and said I should see an oral surgeon to talk about TMJ.

Since then, my throat has been sore off and on. I prodded at the tonsil and more blood tinged saliva followed. My neck feels achey but I don’t stop inspecting it so there’s that too. I found a few things I can push in and out of place and I’m honestly having a hard time distinguishing between normal anatomy and anything else. I’m going with whatever is bilateral is normal. Tonsil seems achey but again, I’ve prodded at it. Neck popping sensation hasn’t happened in a few days. I do feel twinges in my neck and little fluttering sensations. I keep wondering if I’m feeling my lymph nodes swelling. And if the popping was a ligament getting caught on my swollen node. I know I sound crazy.

So if you’ve stayed with me this long, has anyone else experienced the neck popping sensation or pulsating/fluttery feeling? Stiffness in neck or pressure feeling? Ear pain that is mild to barely noticeable, sometimes intensified by swallowing or yawning or talking?

I’ve done the worst and read every single article and research study possible and have seen all sorts of contradictions and have talked myself down and then worked myself back up 10 times over. I have a young family and a husband who has chronic health conditions so obviously I’m a worried wreck.

I hope I haven’t bothered anyone by this. I know I’ve sought medical advice and been told to chill but of course every story of people being brushed off and delayed diagnosis has me wanting to scream at my providers for acting as though they aren’t concerned due to my age and non-smoker status.

Anyway, my CT is Wednesday and I have a follow-up with an ENT on Monday (I kept this appointment after seeing the 2nd ENT because I wanted another opinion.) I’ll take all the positivity you can muster and prayers if you are the praying kind.

Last edited by Cooper; 06-17-2019 05:27 PM.
Cooper #198533 06-18-2019 02:04 PM
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Chill while you wait is good advice. Annoying, but good. There can be bumps that are totally benign. I used to have little lumps in my earlobes that were just calcifications, and a cyst on my arm that was harmless but had to be removed because it was pressing on a nerve and causing pain. Google would've freaked me out if it had been available when I was dealing with those!

Do the scan, and wait and see. And if your neck still bothers you, there are some great neck massage therapy techniques that might help it feel better, once you determine if it needed treatment or not. (Most of us end up getting some therapy after treatment to help ease the strained muscles ... I would imagine they feel good whether the cause is medical or otherwise.) Something to ask about after.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #198536 06-18-2019 06:41 PM
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Thanks for your kind words.

I’ve had a bumpy road health wise... nothing majorly serious but breast cysts, bone cysts, had a 7 cm stone in my gallbladder so I said goodbye to that in April, and then this neck issue came along as soon as I was feeling good again.

And I probably should admit that I’m going through this alone. I’ve chosen to keep my husband in the dark because he went through it the first round with me when the ENT said nothing was wrong (in March). Then an emergency gallbladder surgery, and recently an investigative colonoscopy due to issues. I feel like I need him to keep on going without the worry. It just makes it harder to hold in.

Cooper #198545 06-19-2019 11:44 AM
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It's HARD to stay chill when you've already had a rough medical history. ((hugs)) In this one way I was blessed ... cancer wasn't even on our radar until ... whoa, it's cancer. I just had a 'sore that wouldn't heal' and after many months of two doctors trying to do something about it, the specialist said, "Some things just don't heal till you cut them out and let them start over." So we went with that. I don't know if he had suspicions or not, but he didn't put any ideas in my head. I came out of surgery with the information that it had been a cancerous tumor, and he'd kept going back in till he had clear margins. Gotta love that he did that, and helped keep me worry-free as long as possible. Of course, then everything went totally nuts, but it was still something. smile

And, yes, it's hard when you want to protect your family. Remember, though, that's what family is FOR. You sound like you're at the place where you could use some IRL support. Is there a friend you have who's a good listener, if you don't want to bother your husband? (Not saying we don't listen well here, but there's limited help if it's not actually cancer, and you don't know that yet. Fortunately for most folks who drop by, it ends up not being so. And if it's not, you'll still need a listener for whatever you are dealing with.) A sibling? A pet? (Me, I've got a great teddy bear ... I know that sounds cheesy, but I've had that thing since I was ten, and it has been through every imaginable crisis with me. Took it to cub scout day camp last week, even, as part of my mini display of a proper campsite ... the kids loved it. LOL. But that thing is my 'safe' cuddly.)

Many hugs to you. And open ears.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #198546 06-19-2019 12:59 PM
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Thank you. Your response is very kind and appreciated.

I had my CT scan this morning, tech said likely the report will be in tomorrow. Don’t know if that means I’ll hear anything tomorrow and not sure if they will upload the report to my chart prior to my referring ENT speaking with me first.

Regardless of what I find out, I’ll have to talk to my husband soon. He knows I’m off, I can tell. He generally is my support system (and he’s a great one, but we’ve had so much heavy stuff on our plate, I’ve always been a protector when it comes to him.) A good friend just messaged me today about another friend with a new breast cancer dx at 35! So that has my worries flared.

In all sincerity, thank you for your kindess. I’ll update when I can.

Cooper #198549 06-19-2019 03:17 PM
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Lymph glands can swell from infections too, so it could just be that. I'm glad you are getting a second ENT opinion and I'm glad you got the CT scan done. That will tell you whether or not you need to have a biopsy.

Easier said than done, but try not to worry too much. I can't tell you what a hypocrite I am for writing that! I am the WORST for worrying! LOL! But I know whereof I speak on this! You've done your research, so now you just have to really try to put it out of your mind until your doctor's appointment. Keep busy. Learn chess. Read challenging books. Do a paint-by-number. Get really involved in and binge on a TV series on Netflix. Whatever it takes to get this off your mind until you can actually know something concrete about your situation.

Sending hugs and good vibes your way!!!

Cooper #198550 06-19-2019 03:25 PM
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Also, this isn't really for me to say, but from what you wrote, your PCP doesn't sound like the most compassionate doctor I've ever heard of. Giving her the benefit of the doubt, does she just know you really well and knows that you need a "tough love" approach or something like that? Maybe she is exactly the right doctor for you and you wouldn't want to change her. Otherwise, if it is like it sounds from the way you wrote it, there may be more compassionate, more responsive doctors that could be a better fit for you. Just a thought. But like I said, you are the best judge of what doctor is right for you and maybe this one is an excellent fit. I don't know.

Wishing you all the very, very best!!!!!

Rabbit #198552 06-19-2019 05:17 PM
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Thanks! So, I’m not over the moon for her. But I recently had to select a new PCP and it was really hard to find one who could fit me in for a physical within a YEAR. She’s not terrible but she knows I have anxiety so I think she is dismissive. I actually just read my follow up notes from having her check out my nodes and it just says “treated for anxiety”. Which is basically what she summed up my visit as. She also threw OCD in the mix but then corrected herself.

I guess it’s not fair to say dismissive. I went to her with abdominal pain and tenderness and she immediately ordered a CT. And I had a huge gallstone. She did, however, refuse to make me an urgent GI referral even though I was presenting with very worrisome symptoms (I’ll spare everyone.) I went the regular route (I don’t need referrals to specialists but just won’t get in urgently) and my GI wanted to do a colonoscopy. Unusual for a 35 year old, but he did find 3 polyps which he stated was unusual for my age. I don’t have those pathology results yet... I’m glad I self-referred though.

Anyway, I’m on the fence about her. I think on the one hand she wanted to be reassuring to someone she has diagnosed as having GAD but also lacks the thoughtfulness I would prefer.

Cooper #198554 06-19-2019 06:55 PM
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It's so hard to find a good PCP. I had one I liked years ago and when he told me that he was leaving private practice and was going to work in a hospital, I surprised him and myself by bursting into tears! LOL! To find someone who listens, cares, takes each situation seriously, and has a good track record of accuracy, is a rarity for sure. I have had several specialists that I love. My ENT, my Ob gyn, my radiologist. LOVE these people! But they aren't primary care docs, so oh well.

Cooper #198559 06-20-2019 11:27 AM
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I know my anxiety is making me impatient... how long does it take (I’m sure there is a range) for a CT report to be relayed to the patient?

This is a different experience for me because the last CT I had was at the hospital so the radiologist read it while I was still there and I left with a verbal report from my PCP. This time, I was at an imaging center. The tech said the radiologist would review it that day (yesterday) and the report should be available today. I called the office for the ENT who ordered it and they said I’d get a call when she’d reviewed it. She does work today. Is it usually a couple of days turnover? I know a couple of days isn’t much in the world of a busy medical practitioner but to me it feels like an eternity... especially since it’s likely my report is out there waiting to be read.

Cooper #198564 06-21-2019 07:52 AM
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I called the office the ENT is at today and asked if she had received the report yet. Whomever I spoke with said “yes, I put it on her desk”... “what’s your phone number, the NP will call you.” Now I’m sitting here thinking all kinds of thoughts.

“Why isn’t the ENT calling me? Is it because she said nothing is wrong and now there is?”

“Is it because the NP is better at delivering news?”

And why isn’t my phone ringing yet... it’s been 20 minutes. Is the doctor briefing the NP on my report? I’m losing it. I’m at work so there’s not much I can do to settle my worries while I’m sitting here.

At what point can I call back and ask to speak to the NP as soon as possible? I’m not good with waiting.

Cooper #198566 06-21-2019 09:36 AM
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it's been my experience that my husband rarely heard news from a worker alone even with good news. there was always a doctor in the background talking along with the worker. Are they allowed to call and give results? I don't know. I'm just thinking outloud.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #198568 06-21-2019 10:03 AM
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I don’t know either. My doctor called and gave me the results of an abdominal CT I had. Other imaging I’ve done the radiologist has spoken to me right after.

I called back, apologized for being pushy but expresssd that I was anxious, receptionist was kind, took my number and said the doctor was in until 4 so she’d call me by then. Now I’m wondering if I really should have pushed to find out before the weekend.

Cooper #198571 06-21-2019 11:26 AM
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Cooper,

The cancer center I’m at now gives your the results of a PET/CT right after it’s done when I go back to see my ENT in the same building.

Other places i was treated didn’t give you the results right away, so I went to the Radiology Center the next day to pick up my copy and read it myself. Sometimes it did say it was suspected cancer, so if you can handle that it’s a way to go.

I hate waiting, so once I ordered my own FNAB without seeing a doctor, which proved cancer anyway, which I don’t recommend. So then I had to see my doctors and explain myself. Being I had so many doctors, I was able to get by or it didn’t matter at that point.

I hope your doctor calls back today because waiting is the worst!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Cooper #198572 06-21-2019 11:34 AM
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Update... (if anyone is following along)

Just got a call from the NP and she said that my ENT didn’t have any concerns about my scan and would see me at my next appointment (7/15).

I am feeling a little relief. However, still concerned for my on-going symptoms (namely, unexplained ear pain - no infection was detected, swollen (IMO) lymph nodes, minor sore throat/pain when swallowing, stiffness on side of neck, larger tonsil.) Am trying to address anxiety appropriately so as not to confuse true symptoms with anxiety. I’m, of course, holding onto every case of someone here - and elsewhere - who has had scopes and scans miss something.

I didn’t ask any questions of the NP because I got the impression she was just delivering a message. Plus, I kept my appointment with the other ENT who I saw back in March and that is on Monday. I’ll ask him about my scans, have him check my lymph nodes and ask him to scope me again. Depending on my satisfaction with his responses, I’ll consider getting another opinion perhaps at a different practice (the two ENTs are colleagues.)

I’m sorry if I’m frustrating or annoying anyone here. Perhaps I’m looking for an outlet, or reassurance, or someone to tell me I’m not crazy for being skeptical. I do have medical anxiety and I am getting treatment. And believe me, I do more than anything right now want to put this to rest and move on. So please if you have any words of advice I’d appreciate them.

PaulB #198573 06-21-2019 11:41 AM
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Thanks so much Paul. I appreciate your response. And have reading through many of your posts/your story, I commend your strength and courage through a tough course.

If I don’t see the report show up in my online chart by early next week, unless I get a copy at my appointment Monday, I’ll call the radiology department. I know it took a couple of weeks after I had pathology on my gallbladder for the report to show up online as well as prior imaging I’ve had done.

I always like to read reports myself, even though sometimes I can’t understand what I’m reading. I do try and I do ask questions and even try to retain the answers!

Anyway, my ENT office just called back asking if I still needed to keep my appointment Monday since the scan was normal and I said yes, and they were fine with that but I guess that means things were really not concerning to them. That said, I want a physical exam. At least so a baseline can be established. I had to wait 3 weeks for this appointment even when I told them about a swollen, bleeding tonsil!

Cooper #198580 06-24-2019 06:14 AM
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I’m heading to the ENT shortly. I’m hoping he will go over my CT scan with me, if not, I’ll ask about getting the report for my records.

As I’ve mentioned before, I’m a data person as I research professionally. I’d like to know what the likelihood of the CT identifying a cancer or suspected cancer is. As many of you know, I was referred for a CT not due to any suspicion but because another ENT wanted to reassure me.

And ordinarily it would but I’ve read accounts of folks on here and elsewhere where a CT missed their cancer, especially smaller cancers originating in the tonsil or base of tongue. If you happen to be reading this and are one of those folks or know of the story of one, I’m curious how the cancer was eventually discovered. Persistent symptoms? Insisting that an US and FNAB be done?

My persisting symptoms despite being told my CT was normal are:

Intermittent ear pain (mild, sometimes a sharp pain out of no where, sometimes a subtle throb)
Feeling of a clogged/itchy ear at times
(All war issues are unilateral on side of neck that I’m concerned about)
Intermittent feeling like there is a lump in my throat
Intermittent clicking when I swallow (clicking on affected side)
Right tonsil larger than left (not huge, but definitely larger)
Intermittent bleeding of tonsil when prodded
Bad breath that isn’t explained by oral hygiene (my dentist claims my gums and teeth are healthy)
Feeling of tightness/fullness in neck on affected side
Popping sensation where enlarged lymph node is when I turn head to opposite side
2 (maybe more) palpable lymph nodes in submandibular area (rubbery/hard, semi moveable, pea sized) bilateral
Tenderness at angle of jaw, possibly swelling in that area as well
Intermittent hoarseness (about 2 weeks), is resolved when I clear my throat
Intermittent sore throat, especially on right side... not so painful I would ever see a doctor for it typically


I’ve been on antibiotics for 7 days with no change to the nodes...

So as you can see, some resolution in symptoms or at least decrease in severity but lymph nodes are not changing and odd sensation in neck is still there. Worse when I wake up but I meditate through out the day. It’s not pain like when I’ve pulled a muscle or slept funny on it, it feels more like a swollen tender feeling.

I want to be reassured and put this out of my mind but also don’t want to be resigning and just accept this as normal because it isn’t my normal. I’m happy to investigate TMJ if some or any of my symptoms can be explained by that but I know the lymph nodes are not a response to that. Should I be pushy for more testing or be confident that a CT scan should be pretty telling?

Cooper #198581 06-24-2019 06:24 AM
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I"m going to say a lot of your symptoms are similar to the ones I had when I had allergies. I"m allergic to chemicals (it was awful being around husband during chemo, I had to wear a mask and get a filtration system), formaldehyde, mold. I suffered for 12 yrs on antibiotics due to sinus infections but those symptoms are very similar. just a thought.

I changed my diet and my allergies all except the chemicals went away. no sugar, no gluten, no dairy. works better than antibiotics. just sharing my experience as i know you are trying to put the pieces in a puzzle right now.

best wishes.


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #198582 06-24-2019 07:12 AM
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Thanks Connie. I do have a history of allergies, though the obvious signs have actually gotten better over the years. My dad still suffers tremendously. We do suspect mold in our older home and have had testing but the levels were never to a point where remediation was a consideration. We run our AC to keep humidity down and use air filtration. I do have a pretty constant post-nasal drip during certain times of the year and end up with a bout or two of sinusitis every winter. Crossing my fingers it’s allergies and TMJ. I feel as though I can safely assume TMJ is likely an issue for me as I recall lots of jaw pain after my last dental visit when I had to keep my mouth open for long periods of time. I also have never been able to open my mouth super wide and get jaw pain/headaches when I chew gum. There is also the periodic grinding sound in my jaw when I open it.

It’s always so tough to know which symptoms to take seriously when so many symptoms that can point to serious conditions, can also be explained by much less serious, treatable ones.

Cooper #198583 06-24-2019 08:19 AM
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Got my CT:

“There is mild and relatively symmetric enlargement of the bilateral palatine and lingual tonsils. Allowing for this, the base of tongue is grossly within normal limits.

Several prominent bilateral cervical lymph nodes are seen, measuring up to 9 mm in short axis of the right level 2A station.

Impression:

Mild and relative symmetric prominence of the bilateral palatine and lingual tonsils, presumably reflecting chronic tonsillitis hypertrophy.

Multiple prominent bilateral cervical lymph nodes are not pathologically enlarged by CT size criteria, and are presumably reactive. Recommend continued attention on follow-up.”

The ENT didn’t scope me today but did a visual and tactile exam of the tonsils. Said the right indeed seems enlarged but explained that the CT is showing they are both enlarged and that it’s sort of an “ice berg” effect - there’s more on the left than what we are seeing. He also said that the CT would have picked up on any masses within the tonsil. My ears are clear. He said the ear pain could be secondary to TMJ dysfunction. He also noticed some really tight neck musculature and checked the report before telling me that it was just muscle. He seemed really confident that the CT would pick up on anything concerning (I asked about biopsy or imaging of the lymph nodes and he said they would recommend that if they thought that should be done.)

Told me to watch for other symptoms of Lymphoma, put this on the back burner for now and come back in 3 months for a check of the lymph nodes.

I have a follow-up with the ENT who ordered the scan on 7/15 so if there is a change, I’ll at least be seeing her then. Should I put this to rest for now or should I seek a second opinion outside of this practice? For reference, this is a practice affiliated with a highly regarded institute. Both the ENTs I’ve seen are professors at Harvard. But neither have brought up risk factors for an HPV related oral cancer. The ENT today said “it is lymphoma we’re worried about here, right?”

Cooper #198584 06-24-2019 01:06 PM
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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.

Cooper #198585 06-24-2019 01:18 PM
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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))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #198592 06-25-2019 08:27 AM
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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.

Cooper #198593 06-25-2019 12:54 PM
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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. smile

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)! smile

Rabbit #198594 06-26-2019 05:39 AM
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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.

Cooper #198627 07-01-2019 11:03 AM
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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.

Cooper #198630 07-01-2019 08:05 PM
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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))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Cooper #198633 07-02-2019 07:32 PM
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Any answers yet? Still checking in on you!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Cooper #198635 07-02-2019 08:08 PM
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Hi Cooper! How did your appt go?

Rabbit #198657 07-08-2019 04:46 PM
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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.)

Cooper #198658 07-08-2019 08:28 PM
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I am so glad the appointment went well and she seemed reassuring. That's a good start. I still wish you had answers of some sort, but at least the probability of its being cancer is continually going down because they just aren't seeing it.

Random question ... do you deal with migraine issues? It's something I read up on, and I'm learning more and more of my weird health problems can be associated with my migraines and not just relics of my cancer treatments ... it's been interesting. The one that caught my attention recently in an article had to do with ear and jaw nerve pain, which just jumped to mind when reading your post. (That poor trigeminal nerve gets all sorts of trouble.) Anyway, it's something else you could ask about... it sends pain signals all kinds of ways.

((hugs)) Hope the next appointment goes well too!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #198663 07-09-2019 11:00 AM
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I can’t say I do (deal with migraines) fortunately. I was a sufferer of frequent headaches but the kind that a couple of ibuprofen take care of. Those used to be daily and then while I was pregnant (3+ years ago) they disappeared and returned after. Even now, I get them less than I ever did. I’ve had a few that could probably be classified as migraines but don’t meet criteria for chronic migraines - and I hate that you get those!

I did feel reassured by this new ENT but of course within 24 hours I was feeling like she was basically just agreeing with everything the prior ENTs said. It was very thoughtful of her to show me my scans and point out anatomy... she never did point out the nodes but when I mentioned something behind my ear that felt odd, she took another look at the scan. She also did a scope herself. Her demeanor made me feel so relaxed in the moment that I didn’t ask her what could be causing the nodes to stick around. I’ll be sure to ask the ENT I’m seeing on Monday.

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Swollen lymph nodes did NOT start this journey for me. In fact, it was a weird “popping” sensation in my neck. Painless but unnerving and then some feeling of tenderness. I then noticed my right tonsil was larger than the other and saw an ENT. She scoped, wasn’t concerned, prescribed antibiotics. Said she would order a CT if it would ease my anxiety and because she felt that given my profession, I probably needed some more definitive info (I’m an SLP).

During 2 week wait for CT, I felt 2 nodes on either side of my neck... level 2 I believe. Pea sized or a bit bigger. Had CT. CT results normal. Several prominent nodes noted, largest 9mm at short axis. Tonsils mildly enlarged bilaterally but believed to be pretty symmetric. Follow up ENT said nothing to be concerned about, go enjoy my youth! (I’m 35). Saw another ENT for 2nd opinion, viewed scans and scoped and pretty much said she didn’t see anything to worry about. Wasn’t sure why I was on week 5+ of antibiotics though. Saw tonsil stones but no signs of infection.

I’ve done LOTS of research. Obnoxious amounts. Journal articles mostly but some from well-respected institutions with citations. If my largest lymph node is 9mm at the short axis, is this even enlarged? Or does the fact that I feel them in general make them enlarged? The CT report just said “prominent”. Which read to me: ENLARGED. But the research is mixed. 2nd opinion said they don’t worry about them unless 15mm or larger. CT report said size doesn’t meet criteria to be considered pathological. Presumed reactive. Dx with chronic hypertrophy of the tonsils. Lymph node size is unchanged, I think. I’ve read enough on here to know that lymph nodes with cancer can be small... though research does support this as being low incidence. 15mm seems like a high cutoff though... sensitivity is quite low with that cut off. I don’t know if my ENT will do a FNAB if I request it. I plan on asking why if she doesn’t specifically state why one isn’t warranted. I also read that it’s not only size but the necrosis that should be evaluated. Should I assume this was evaluated and not just a “it’s smaller than 15mm so it’s all good!”

If anyone reading this who had a suspicious node evaluated would care to share size and whether it was benign or not, I’d appreciate it. And whether you had a FNAB. I’m guessing since I’ve had a CT, an US wouldn’t be useful other than if it was to guide the FNAB.

Last edited by ChristineB; 07-09-2019 05:42 PM. Reason: related info, joined with ongoing thread
Cooper #198703 07-13-2019 08:13 PM
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Can’t sleep... super anxious.

Thought I’d update. Mostly for myself to keep track of what I’ve done to “figure this out.”

I sent a message to ENT #3 (the one who was my second opinion and who had a great bedside manner). She relayed that sometimes lymph nodes simply stay enlarged and that if they were to increase in size, we would want to do more imaging but at this time that is not warranted. She didn’t have a lot of advice about the ear pain... soft foods, talk to my dentist (I did, he was useless and wasn’t even sure I have TMD.) I do think that a real possibility for at least something because I do have the hallmark grinding sensation in my jaw joints sometimes, and have been more aware of my tendency to clench or hold the jaw tensely. She said I could schedule a follow-up if more concerns arose.

Nodes unchanged. Have this weird bump (or node) begins my jaw/ear. Can’t really explain it because it doesn’t have clear edges, ENT 3 thought it was possibly muscular but did feel it and did note that it was only on my right.

Still an occasional sore throat and/or quick stabbing pain in rt tonsil area. Ear pain still comes and goes. After some throat pain earlier, I rubbed my throat and felt this weird almost crackling feeling. ENT 3 said I have tonsil stones but I can’t see any with my throatscope.

ENT 2 appt on Monday. Super anxious mostly because I feel she will be dismissive and just reiterate the CT didn’t find any tumors or asymmetry. Of course I know that’s a good thing but with the symptoms persisting, and the nodes, it’s hard to be reassured and I’m not sure what will reassure me other than a FNAB. Finally almost done antibiotics which will be good.

Anyway, like I said, no point really... thanks to those who have followed along and have been encouraging. I know at this point these are just symptoms and most hours of the day I’m OK focusing on other things but tonight I’m just really worried yet again.

Cooper #198708 07-15-2019 09:43 AM
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Final follow-up... going to step away for now.

ENT who ordered the CT couldn’t have been more condescending today. Basically told me I’m anxious, have TMJ and I can go from Dr. to Dr. and they’re going to say the same. Gave no suggestions for how to treat my pain or why I might have persisting tonsil pain/sore throat. Anxiety! Told me the lymph nodes are too small to even biopsy. Said I’m too young (35), not a smoker/drinker nor do I have a family history of HNC so I just needed to relax. Didn’t even bring up my scan even though the nurse asked me if I had it with me and said she’d boot it up if the doctor wanted. Couldn’t even take the time to go over my scan with me!

Anyway, no ENT has been concerned enough to pursue this even further and my expenses for pursuing this are going through the roof. So I need to cool-it because I feel like I’m wasting my time and money.

I wish you all well.

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I started to feel a bit better (not so much physically but mentally.) I won’t dismiss that I have symptoms of TMJ dysfunction. I went to the dentist today and it was brutal keeping my mouth open. He was patient and let me take breaks. My left side was clicking a bit at the end of the hour. He felt it and said it wasn’t too bad. So far, he’s offered no suggestions regarding the TMJ.

I’m still having pain in the right tonsil... it’s not constant but can be suddenly quite painful, sort of like bee stings or an ache. Still looks nothing like the tonsil on the left but I guess I can’t expect that to change at this point. I’m still having the intermittent ear pain. Again, it’s not an ache but more of like stabbing and sudden and goes as quickly as it came on. Sometimes happens more when I’m talking.

Tonight I tasted blood and when I spit in the sink, my saliva was bloody. I saw blood on the tonsil but also wasn’t sure if it was from the dental work on the same side because that’s still tender.

I’m so discouraged and scared. ENT basically told me that a clear CT means she will see me in 6 months. I don’t trust her knowledge of HNC anymore given the fact that she has suggested it is a smokers/drinkers disease. The other ENT (not the one who ordered the scan but within the same practice) wanted to see me in September. The 3rd ENT (different practice) is seeing me Tuesday. I made the appointment online and I know she was willing to see me again given correspondence we had through my patient portal.

I want to be like many others who heard “CT was fine, you’re fine” and went on their way and everything WAS fine. But I’m dwelling on those cases of misdiagnosis. Those who were told they were fine and found out later their cancer was super small and hidden in the tonsil or no primary was found at all. And then I worry all over again about my nodes. And why is my neck (specifically the supra-whatever it’s called muscle) still hurting after 2 months? I’m worried there is a large node pushing or stretching it (as I’ve read about) but would the CT have caught that? I’d hope so. My nodes are unchanged at least since the CT, in my opinion. So that was a month ago...

My questions are... are my symptoms not being seriously considered since they are more typical of advanced disease and given my CT and not clinically enlarged nodes, advanced disease would be unlikely? Surely I cannot be imagining neck, throat, ear pain and bleeding. Am I perseverating on the rare cases of misdiagnosis? Or is it common and I’m right to be concerned that I’m just in that weird “we don’t see anything so there’s nothing we can do but wait” phase? 0/3 ENTs have been concerned. My PCP wasn’t concerned. My dentist wasn’t concerned (though he doesn’t know the whole story and I suspect he wouldn’t be concerned.) I know many folks with hx of tonsil cancer have indicated lack of symptoms yet a quick internet search includes ALL of my symptoms. Are they really not all that common? Does anyone have any thoughts or advice? It can be blunt and honest.

Just because I mentioned it, I AM being treated for anxiety. And I’m trying to follow the protocols for alleviating TMJ dysfunction symptoms (with no success... other than taking ibuprofen which I usually avoid due to stomach issues.)

Cooper #198768 07-26-2019 06:51 AM
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((hugs))

I get ya about the anxiety. I'd pretty much graduated from my therapist before cancer hit ... now I'm back again regularly. Sigh. Oh, well, they are non-profit and I suppose I'm supporting a good cause!

You have pain. That IS worth pursuing. Never be made to feel it's not. No, it may not be cancer, but you still deserve to be heard about it. (And I do read your posts, even if I don't have a response.) Me, I'm allergic to ibuprofen since everything went down, so I have to use other meds ... are there other options your doctors will suggest? And my more-like-TMJ issues didn't go away till I lost my teeth ... NOT a solution I recommend, but it did seem to indicate that a properly-fitted mouth guard would have helped some. (Never could get that to work for me at night, sigh. And the pain was in random weird sides of my jaw, not a tonsil.)

I can't really think of other good advice, except that I've got friends who went on to find their issues were more immune disorders (Lyme and such) ... can have truly wonky side effects. My doctor keeps checking me for that every now and then because for some reason ticks find me tasty and I do a lot of Scout volunteering. Don't want to add that to everything else I deal with. Anyway, there are other things that could explain persistent health issues, and hopefully a good doctor will walk you through them.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Cooper #198791 07-29-2019 11:15 AM
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Thanks Kristen for continuing to read and reply when you can.

I feel like the pain is what is keeping me from dismissing this. I don’t personally know anyone who suffers from TMJ pain so I can’t compare notes. It seems that TMJ pain CAN mimic the pain of cancer and vice versa. Obviously the tonsil pain is not commonly associated with TMJ pain. I’ll admit that I do sort of “feel around” in there every few days which probably irritates the tonsil though I also do the same on the left and that one doesn’t give me pain. I’ve told myself that I won’t touch it until my appointment tomorrow and see if it improves.

I also have a tight, uncomfortable feeling right around the angle of my jaw. There are lots of lumps around there but I think it’s a gland? I feel similar lumps on the left. I don’t know what’s normal and not anymore. I have moments where I think of the ENT’s parting words to me “we did the CT for your anxiety, that’s all”. And I feel comforted. Only to then hear her say “you don’t smoke or drink, I don’t see any cancer.” I almost feel like I remember her saying “right now”. Then she said “I’ll see you in 6 months.” And man, I want to be comforted that she was so confident that she didn’t want to see me for 6 months BUT, given her remark about my risk factors, I’m not convinced of her experience with this disease.

I can’t remember if it was you or Rabbit, who have both given me good advice as well as kind words, who suggested I ask for clarification on why given my symptoms, malignancy has been ruled out. I’m going to do that tomorrow. That’s definitely been hard for me to understand. The ENT who was annoyed with me actually said “you don’t have symptoms, you have anxiety.” Which is not untrue, however, my PCP used my anxiety to tell me my abdominal pain was not real and I had a 7 cm gallstone in my gallbladder. And I’m not using that in this scenario because I only just thought of the last time I was told that anxiety was causing my symptoms. My pain feels very very real to me. And these lymph nodes are palpable and real as well.


Cooper #198800 07-30-2019 11:34 AM
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Alright.

So I saw the ENT today (the one I liked the best of the 3, ya know, the one who knows about HPV.)

She said she thought my right tonsil appeared more noticeably bigger than the left today but said not alarmingly so. She noted tonsil stones... and mentioned that they are oddly only in the right. She gave me the choice to be scoped... said she didn’t feel like she needed to but wanted me to decide. I let her scope me. She said there was some pus on the back of the right tonsil. She took a culture and prescribed me augmentin. She wants to follow up in a few weeks, unless anything changes. She wasn’t concerned with my lymph nodes, including the one I hadn’t noticed before my scan. Said they are all still pretty small.

She said that she didn’t “see anything remotely scary or anything she considered to be an indication of cancer”. She said that she felt that way with “as close to 100% confidence as I can, as no one can say that with 100% confidence.” She noted that given that my ear pain and throat pain aren’t constant (I.e., I mentioned that I can have many painless swallows or not experience the pain for a bit and then I get a stabbing pain out of nowhere), she believed it is more indicative of TMJ pain. She said if the antibiotics didn’t address the throat pain at all, we will discuss other options.

I’ll go back to see her on 8/27.

I honestly don’t know what I hoped for. Of course, I hoped and prayed that she would give me nothing but reassurance while at the same time being careful and thorough. I do believe she was. And she knows that this has been a continuous concern for me and that I am very worried (my almost crying probably made that even clearer.) I didn’t feel rushed or dismissed so I so want to trust her.

Thoughts?

Cooper #198801 07-30-2019 12:15 PM
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Cooper,

I’m glad you finally found a doctor that is taking you seriously, and noted several things that hopefully are minor, and goes away on their own or from minor treatment!

I’m not saying it’s the same, everyone is different, and I had other indications when diagnosed in 2009, but a swollen lymph node was my major complaint. My cancer was not visible by scope of the tonsil. I had a swollen lymph node. There was suspicion by CT, and PET scan, which proved positive for cancer with a FNAB, fine needle aspirational biopsy, of the swollen lymph node, and then a biopsy of the throat where the cancer was found in the tonsil. When they did the biopsy under anesthesia the cancer was found in tonsil just under the mucosa, if that’s correct, and a biopsy of the sample proved posits for squamous cell carcinoma.

I hope yours is not the same, but wanted to let you know. Oh, I had a blocked salivary gland under the tongue, which was taken care of during the surgical biopsy, and plugged temporarily. That was painful, and took three weeks to heal. By that time I was scheduled for indication Chemo.

Last edited by PaulB; 07-30-2019 03:36 PM.

10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #198802 07-30-2019 03:43 PM
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Hey PaulB!

Thanks for your message. I do understand that a number of tonsil cancers cannot be seen. I’ve read your story and the stories of others here and even a few articles easily found via google. I’ve read it can hide within the deep tonsillar crypts. Which I’ve also been told that I have. It pains me that I know all this (because I’ve spent an absurd amount of time searching and researching), but none of my doctors are concerned about this possibility - or so none of them have brought up. It’s honestly so discouraging at this point and my continued discomfort has me depressed.

I’m suspecting, and correct me if I’m wrong, that your suspicious node that led to the biopsy was “enlarged” by clinical standards? I know you’ve said that you’ve had others that were very small... and I believe WERE malignant? The thing is, my nodes were not deemed to be enlarged by clinical standards (the largest is 9mm in the short axis... no other information on the other nodes.) I believe I can palpated 4. One on the left (side that is asymptomatic) and three on the right. None of those have noticeably changed size in 6 weeks. And none of my ENTs are concerned with them... saying they are probably just reactive nodes that may have/will be always there. I have no idea if they’ve actually been around for awhile or not... didn’t feel them until my neck started feeling funny and noticed my tonsil. My CT also noted the tonsils were bilaterally mildly enlarged but pretty much symmetrical.

It’s beginning to feel like I’m stuck until things get worse, get better and I can just move on. If this truly is TMJ, I feel like there should be more advice being given to me in the way of pain management. My jaw hurt so bad when I got home that I had to pop 4 ibuprofen just to take the edge off.

If you or anyone else knows how one might 1. find an ENT who specializes in HNC 2. convince a scheduler to fast track an appointment. I’m in the greater-Boston area. I called one of the CCC listed and they actually gave me the number of the same ENT practice I’m already being seen at. I’ve seen 2 docs at Mass Eye and Ear and one at Boston ENT which I believe is associated with Partners who operates Brigham. I believe I put a call in to Beth Israel as well. I’ll figure it out and make calls tomorrow.

Cooper #198803 07-31-2019 07:21 AM
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Okay... I made an appointment for tomorrow with an ENT who is also a HNC Oncologist Surgeon. Her reviews aren’t stellar (mostly complaints with her bedside manner), so that worries me because I’m super sensitive and emotional. BUT I’m not there for someone to be nice to me, just for someone to take my concerns seriously who also has experience. Apparently this practice has access to all my records from all the ENTs I’ve seen. This makes me a tad nervous since she could be coming in with the expectation that I’m just another hysterical hypochondriac.

Cooper #198804 07-31-2019 10:42 AM
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I don't think you're hysterical. You could, possibly, be a hypochondriac ... but that's for a medical professional to determine, right? And you DO have real and legitimate pain, and having all those records together might just give this new person enough information to figure it out.

Or not, as they never seem to have time to review it all beforehand. But at least she can listen to you and review it after, if necessary.

I hope this goes well for you and you at least find the beginning of answers.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #198805 07-31-2019 11:19 AM
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Posts: 37
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Thanks Kristen. I won’t argue that I’m a hypochondriac. I mean, in this situation, if that’s the bottom line then I’ll gladly wear the title. Funny enough, I spent the first two years of my daughters’ lives (twins) ignoring my health all together. I didn’t have anyone to watch them (no family nearby) and then used all my sick time when I finally went back to work on them. I hadn’t had a physical in a few years or any other routine visit... including a dental exam. It was always on my mind, but there was never time... husband who works late, missing work after a year-long unpaid maternity leave, etc. Now I’m finally prioritizing my own health (lost 50 lbs and have kept it off for over a year!). Which for me, coupled with anxiety/depression/panic, can lead to some unpleasant mental places.

I appreciate your continued support. I’m sure, as someone who has been through what I’m worried about, it can be annoying to have another hypochondriac post up a storm. So your positivity and advice is so much appreciated.

Cooper #198806 07-31-2019 11:29 AM
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No problem, Cooper. I've had pain that no one could or would solve, and I absolutely hate when that isn't taken seriously. I really and honestly hope that this is not where you end up belonging (who wants to be in the cancer club?) but right now, it seems to be the place you're heard. I don't respond well to certain common medications, and one neurologist, who swore she had a whole list of ideas when I first went to see her after my family doc and my dentist ran out of ideas ... she told me, when I stopped the medication (I took it anyway, knowing it would cause me ill and long-term effects, so I could be seen as a good sport) that "No one ever has that problem, it's not a real side effect, it doesn't exist" and after I proved it was the first side effect on the list, she hemmed and hawed and then admitted she had no other ideas and "You're really a difficult patient, aren't you?" No admission that I was still in a great deal of pain. No admission that there was a real problem. Just that her one answer for everything didn't work, and so I must be the problem.

Yeah, I stopped seeing her and asked for a different referral. Who started with the same med recommendation, which I firmly refused. He didn't have any better ideas either, but at least he was still trying. I gave up altogether and just lived with the pain, till life circumstances (read: more cancer treatment side effects) caused problems whose fixes seemed to also change the pain issues. I think I was right about the problem and its origin, and I've got my bets placed for when it will resurface, LOL, but at least right now I'm okay and I have better things to say if I ever have to return to doctors like that ... more information for my file.

So ... I will listen, because everybody needs somebody to take them seriously. Can't do much more than that for you, but I can at least believe you. Some things are just pain with messed up nerves, and can't BE fixed (in which case, doctors ought to just say so, and it may be what you're dealing with too), but even knowing that much is a good start.

((hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Cooper #198811 08-01-2019 06:02 AM
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Posts: 3,267
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Cooper,

You may be hypochondriac, but that doesn’t mean you can’t suffer other ailments, and don’t just mean cancer. So far, the doctors haven’t found any, thankfully. You mention going to other centers on Boston. I’ve never been treated there, but I hear done are top cancer centers. I know of one doctor there who I never met, but I follow his articles. I believe he worked with some of my doctors in NYC. His name is Dr Hadaf and is chief of oncology at one of these hospitals. He wrote a book that was co-authored by my doctor.

You’re probably better off going to a cancer center as they see cancers every day and train for it.

Yes, I had a cancer that was as small as 3mm found by a PET/CT scan. It was a new recurrence that was early in its stage cause it wasn’t found before in prior scans and cancers.

Too bad you can’t have a PET/CT, but it’s expensive, and if a ct scan was clear they may not proceed to another, Idk.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #198812 08-01-2019 09:03 AM
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Thanks Paul,

I’m going to see a doctor who is part of the HNC surgical oncology team at a top facility. Her reviews (that I’ve read) include many accounts of HNC patients. I’ve read more about her surgical successes than diagnosis but I she is a trained ENT. Obviously, I’m hoping for reassurance and to truly feel reassured. I’m super nervous... this is the first time I’ve felt THIS nervous since I started this journey.

Just a question... I know that your tonsil cancer was not visible to the eye prior to your tonsillectomy, but was the tonsil that had the cancer different from the other in any way? I’ve read many articles on asymmetry of the tonsils and how in most cases, this asymmetry is benign. Mine are also probably not more than a degree different in size but the rt one does have (that I can see) extra tissue that extends down further into the throat. I know my ENTs have seen a lot more tonsils than I have, so maybe for them this is something they see more often while for me, it’s alarming. I only wish I had been more aware of my oral structures so I’d know if this was a more recent development or if it’s just how I’m made. Honestly, up until the past couple of years, I used to get frequent sore throats! Often it was viral but I’ve had strep a handful of times as well. But never often enough to see a specialist.

Anyway, I’m nervous so I’m rambling. Hoping for a positive outcome!

Cooper #198814 08-01-2019 03:25 PM
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Cooper,

Good luck with your appointment, and hopefully it brings some type of resolve for your concerns.

I never had a tonsillectomy, although the chairman of the head and neck cancer division did the robotic surgery on tonsils, probably clinical trial, which was new in 2009, and was one reason I went to that ccc. My surgeon was in the same hospital under him, but he didn’t do the robotics, so I went on to do Induction Chemo 3x, massive dosage of three chemos, which was to be followed by 7 weeks chemoradiation, I only did one week of induction chemo, and made it home for the weekend, but was hospitalized at a local hospital that day. From there things went from bad to worse and was unconscious for a month, in the hospital and nursing facility for 6 months, and couldn’t walk for a year. I actually had to learn to walk again. Thereafter, I had 6 more recurrences.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






PaulB #198816 08-01-2019 05:19 PM
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Paul,

What another tough chapter in your story!

So, unfortunately, the appointment wasn’t much different than what I’ve encountered thus far. Though the doctor listened to my concerns/symptoms (despite having my full record from the other ENTs available to her), she supported their findings but not with any more information, as I had hoped.

She did concur that my right tonsil is larger. She denied the presence of any signs of infection or tonsil stones. Which was surprising because the ENT I saw Tuesday mentioned both and was going to put me on augmentin though I think she forgot as I haven’t got notice of it being called in. I can definitely see “debris” in the tonsil crypts but it does appear to wipe off rather than pop out, as I expect a stone would.

I asked her about the lymph nodes and she stated she wasn’t concerned with them. She said they are not pathologically enlarged. I asked about a biopsy of the nodes and she said they are too small and she wouldn’t be able to get an adequate sample. Plus, if they contained cancer cells, we would have to go back in to look for the primary anyway. This was after she said that it was a “gray area” when the tonsil was enlarged but not in a worrisome way and it appeared healthy. She said a biopsy would be the only way to know but that she wasn’t stating that was necessary. She kind of left that to me I guess. I told her I didn’t want that unless she felt I was putting myself at further risk by not, she didn’t really answer but ordered a follow-up CT for late September (3 months after the last one), to see if the tonsils had changed. She said several times “tonsil carcinoma usually presents itself over time... it’s been 6 weeks since your CT and it hasn’t presented itself yet.” I could only guess she meant a pathologically large lymph node appearing or a visible mass on the tonsil.

She gave me another TMJ handout. Almost verbatim from the one ENT 2 gave me (complete with typos!) Told me to ask my dentist about a bite plate. Do some exercises. Use some heat. Take ibuprofen regularly. See me back with any changes.

I’m stuck somewhere between feeling like this is a story I’ve read a few times here before. You know, the watch and wait (she actually used those words) and then the progression and dx. And then I tell myself that she and 3 others had no concerns regarding cancer and are aware that that’s my concern... so there have also been plenty of folks on here who get the “it’s all OK!” And don’t question it, and probably, it is, right? I’m only reading about the few who were missed not the many who were in fact, ok? I asked if she had seen many benign asymmetrical tonsils and she said “yes, tons”.

So that’s all I have for now, I guess this is my last post. Thank you all for following my story, lending an ear to listen to my thoughts/fears, and giving me so much of your time and support. You cant imagine how much having someone taking me seriously has meant to me. Everybody needs a shoulder to cry on sometime and I dont know how I would have coped without Kristens help. Paul I appreciate all the in depth research you have done to learn so much about oral cancer, thanks for sharing it with me. For now its best if I try to begin putting everything behind me, at least for now until I can sort this out better.

Cooper #198817 08-02-2019 10:34 AM
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Cooper,

I’m glad you were able to see a reputable doctor at a CCC, and from her findings, there is no cancer, which is a great thing! Like I mentioned, the only real way to really decide if it’s cancer or not is a biopsy, but I’m sure if there were any indications of cancer they would have done more as surgeons like to operate. I don’t know what level of suspicion is needed before one is done? I’ve always had a FNAB first, fine needle aspirational biopsy under ultra sound guidance, and most, if not all proved positive for cancer. I think for other potential surgeries they needed to confirm the positive FNAB by a direct biopsy under anesthesia. Then the surgeon proceeded to surgery or not depending on the results in the operating room.

I hope all your tests prove negative! There could be something there, idk, but you’re on the case! In the interim, you found out some details about minor medical issues that can be treated.

As mentioned, I wish they could just do a PET scan, which is pretty sensitive for cancer, but it’s still not 100 percent! Their expensive, about $8,000 here, but since you had a Ct scan and physical check the doctors did not find anything. If they did, maybe a Pet Scan would be ordered, but sometimes they don’t and just use the CT scan, which wasn’t my experience as I always had a PET scan initially or after a CT or MRI.

I hope this helps!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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