3 yrs in remission H & N cancer - Experiencing ear discomfort

Posted by coachlowe @coachlowe, Feb 16 2:30pm

Had exploratory surgery at Mayo to remove cancerous lymph nodes in Nov '21, followed by radiation and chemo. Squamous Cell Carcinoma (HPV Induced). Was told that recurrence would be highly unlikely. Now experiencing ear discomfort on same side that was affected. At lat ENT appointment, I heard my ENT doc (in Nov '24) tell an intern that one of the signs of Head n Neck cancer returning is ear pain. Then my ear discomfort starts arounf Christmas time. I've never even had an ear infection before. I'm worried, especially after PET scans never showed cancer the first go around. The only way we knew it was present was because of an enlarged lymph node in my neck that tested positive. Anyone experience anything like this? Advice? Scheduled to see ENT within the week.

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cmickelson15 | @cmickelson15 | Feb 19 1:08pm

Hey @coachlowe I just reread my comment. I meant to say “NOT a feeling of fullness” rather than “NOW a feeling of fullness”.

coachlowe | @coachlowe | Feb 19 8:59pm

When I read that, I thought it might be from nerve issues following surgery. I've wondered if my own issues might be related to regaining more feeling on that side of my head/neck.

On an off the wall sidenote, I was reading the other day that there is a connection between ear fullness and sucralose intake. I drink A LOT of zero calorie pop with sucralose. Also drink the Red Diamond Zero Tea which also contains sucralose. I've been off of sucralose for the past week and noticed a difference for sure. Obviously, the only way to be sure is jump through the hoops. With my medical history, I'm not in the mood to just wing it. I will turn every stone.

504branchie | @504branchie | Feb 24 12:01pm

I had a TT for Oncocytic (Hurthle) Cell Carcinoma in June 2023. After 18 months, Mayo cleared me and said I don't need a scan/follow up for a year. Recently (last couple months) I started with a pain in my neck that became a shooting, aching, debilitating pain over time just under my right back of each, down into my throat and into my clavicle area to my shoulder. It got so bad that the little sleep I was getting was completely lost. I couldn't move in bed, put any weight on my arm to push me up, etc. Standing up was actually better than lying down. I put ice, heat on it, took ibuprofen, etc., and ended up writing my doc at Mayo who said to see the PCP where I live since I had a clean scan in November, and he didn't think anything would grow that quickly. He also said to get a CT scan if it didn't get any results. I went to the urgent care and received an antibiotic for a possible lymph node infection. She also wrote me an order for an ultrasound if the antibiotics didn't seem to have an effect. I have been on the antibiotics since last week Thursday, have had 8 doses and am feeling some relief. I am not saying this is what anyone else has, but this is where I'm at. I will continue to watch this as I feel like it's been a real issue since the surgery and get the ultrasound if it doesn't fully go away. I wish you the best and keep us posted!

coachlowe | @coachlowe | Feb 24 10:30pm

In reply to @504branchie "I had a TT for Oncocytic (Hurthle) Cell Carcinoma in June 2023. After 18 months, Mayo..." + (show)

Wishing you the best as well!! My ear pain has subsided with the exception of just a few moments here and there. Have an ENT appointment on Thursday to get the ball rolling. Doubt I'll learn anything, but the hoop jumping has to start somewhere 🙂

misusocks1 | @misusocks1 | 6 days ago

In reply to @mojo244 "Responding to nearly all of you. I’m 8 1/2 years in remission from stage IV H&N..." + (show)

@mojo244

Responding to nearly all of you.
I’m 8 1/2 years in remission from stage IV H&N cancer ( base of tongue, lymph nodes). My first symptom was extreme ear pain for nearly a year which was misdiagnosed by primary provider twice and ENT once.
The ear pain was severe and both doctors diagnosed it as TMJ. Thank God my dentist diagnosed it as cancer…yes, my dentist (during a 6 month check up).
Anyway, my oncologist told me that my ear pain will most likely never go away because of nerve damage caused by a tumor. He was correct, my ear pain has never gone away!
Tinnitus began during second round of Cisplatin and has never ceased and is very loud.
Migraine began close to the same time and has never ceased. All medication has failed including Botox. I live with a 24/7 pain level of 8-10 and doubtful of this ever changing.
Neck pain is also 24/7 along with neuropathy to my shoulders, hands and fingers.
Jaw trouble is also a problem but I’m on a muscle relaxer which helps me open my mouth much better to eat and talk.
Many other post treatment issues as well.
I guess what I’m saying is don’t stress that your cancer has returned when it very well may be the aftermath of treatments.
I’m sure for those of you that are less than 5 years out are still getting 6 month check ups and throat scopes from your oncologist as well as PETCT Scans. If your cancer has returned it will show so don’t stress over pain and discomfort. As you know, cancer feeds off stress and sugar so be careful of both.
Make sure you are being completely open with your oncologist . They can prescribe you something for stress. Trust your oncologist and the results of your tests.
I’m not saying that I don’t worry because I do but I don’t let it overwhelm me.
As for living with my issues, I’ve just learned to live with them and am just glad to be alive!
I hope this information helps at least one of you.

Fight the good fight,
MOJO

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@mojo244 I am newly diagnosed with salivary gland cancer. Still waiting on second set of tests to find my stage.

I am in severe ear and throat pain with jaw tenderness and extremely exquisite pain under my chin..all on the right side. I am wondering if pain control…I take 3 7.5/325Percocet and a muscle relaxer along with gabapentin. It just isn’t enough. I work full time am the provider for my household.

When man I expect with regard to pain management

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