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Re: Tonsil Cancer? [Re: Cooper] #198658
07-08-2019 08:28 PM
07-08-2019 08:28 PM
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KristenS Offline
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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
Re: Tonsil Cancer? [Re: KristenS] #198663
07-09-2019 11:00 AM
07-09-2019 11:00 AM
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Cooper Offline OP
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Cooper  Offline OP
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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.

Lymph Node Size #198664
07-09-2019 11:17 AM
07-09-2019 11:17 AM
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Cooper Offline OP
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Cooper  Offline OP
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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
Re: Lymph Node Size [Re: Cooper] #198703
07-13-2019 08:13 PM
07-13-2019 08:13 PM
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Cooper Offline OP
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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.

Re: Lymph Node Size [Re: Cooper] #198708
07-15-2019 09:43 AM
07-15-2019 09:43 AM
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Posts: 37
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Cooper Offline OP
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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.

Re: Tonsil Cancer? [Re: Cooper] #198763
07-25-2019 06:30 PM
07-25-2019 06:30 PM
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Posts: 37
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Cooper Offline OP
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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.)

Re: Tonsil Cancer? [Re: Cooper] #198768
07-26-2019 06:51 AM
07-26-2019 06:51 AM
Joined: Jun 2013
Posts: 345
alabama
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KristenS Offline
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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
Re: Tonsil Cancer? [Re: Cooper] #198791
07-29-2019 11:15 AM
07-29-2019 11:15 AM
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Posts: 37
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Cooper Offline OP
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Cooper  Offline OP
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Posts: 37
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.


Re: Tonsil Cancer? [Re: Cooper] #198800
07-30-2019 11:34 AM
07-30-2019 11:34 AM
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Posts: 37
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Cooper Offline OP
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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?

Re: Tonsil Cancer? [Re: Cooper] #198801
07-30-2019 12:15 PM
07-30-2019 12:15 PM
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Posts: 3,241
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PaulB Offline
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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






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