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Re: Tonsil Cancer? [Re: Cooper] #198658
07-08-2019 08:28 PM
07-08-2019 08:28 PM
Joined: Jun 2013
Posts: 326
alabama
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KristenS Offline
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KristenS  Offline
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K

Joined: Jun 2013
Posts: 326
alabama
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
Joined: Jun 2019
Posts: 28
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Cooper Offline OP
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Cooper  Offline OP
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Posts: 28
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
Joined: Jun 2019
Posts: 28
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Cooper Offline OP
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Cooper  Offline OP
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Joined: Jun 2019
Posts: 28


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
Joined: Jun 2019
Posts: 28
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Cooper Offline OP
Contributing Member (25+ posts)
Cooper  Offline OP
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Joined: Jun 2019
Posts: 28
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
Joined: Jun 2019
Posts: 28
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Cooper Offline OP
Contributing Member (25+ posts)
Cooper  Offline OP
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Joined: Jun 2019
Posts: 28
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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