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

Thank you for your post! It feels like I’m in the same boat except I don’t feel any enlarged lymph nodes. But I do have varying types of ear pain on the treatment side. I was Dx with base of tongue ca with involvement of several levels of lymph nodes in my neck in August 2020 and Tx plan was standard protocol of chemo and radiation. I have been experiencing severe Burning Mouth Syndrome (BMS) since Tx ended. Since April/May of 2024 I began experiencing varying types of ear pain, only on affected side and never with the opposite ear. It could be stabbing, burning, radiating, shocking (like someone just electrocuted my ear that shoots down my neck). One of the most frequent types of ear pain is a feeling of “fullness”. Like what you get when flying. Lots of times it feels like someone is blowing up a balloon in my ear and it’s going to pop! And internally I’m screaming “ENOUGH ALREADY.! POP!!!” All the different types of pain radiates through my ear, down my neck, and begins to involve my larynx to where my voice starts to get scratchy, soft spoken, coughing, and then loose my voice altogether; particularly when in conversations lasting more than an hour. My (first) ENT and Radiation Oncologist have told me this was all in my head and they’ve never seen anything like it in over 30 years of practice. For the last 4 years I’ve felt dismissed and just a patient number. Not someone they cared about and wanted to find the problem and fix it. My new ENT immediately Dx Glossopharengeal Neuropathy thinking it was an inflamed or damaged 5th cranial nerve for the ear pain. That Dx did not include the cause of the BMS. I was referred to a Neurologist and tried several types of medications but the side effects were too much to handle. I’m super sensitive to anti-depressants, anti-seizure, and pain meds above low doses. A recent MRI showed inflammation of the 7th cranial nerve that typically explains Bell’s Palsy, but I don’t have any of those symptoms. I’m wondering if the Radiologist missed that it could have been the 5th cranial nerve?? The Neurologist is recommending a spinal tap. I need to have more conversation about why this procedure as I have not found any literature to use this method to “heal/cure” the ear/radiating pain. Unless it’s to rule out other disease/conditions.

I’m so sorry for the very long post, but I’m anxious to see responses to your question as I feel I may benefit from this conversation immensely!

Wishing you the best in getting a resolution to your condition.

Hello @coachlowe. Are you saying that they never found your primary tumor outside of the lymph nodes? I have a very rare location for my SCC cancer, non hpv, in my external ear canal down by the eardrum. It had invaded the surrounding bone with no external evidence to see and caused an increasing ear pain over 5 months until finally diagnosed by biopsy. It was not visible on the CT with contrast that was done. One of my Mayo surgeons told me that cancer recurrence can have pain as a symptom, and it is a very persistent pain that does not get better. I have not had any local recurrence in 13 years, but have metastatic disease and all 4 of those incidents were found on routine PET and CT scans. With two lung mets, one on a muscle, and one in kidney and lymph nodes, there was no pain involved. I believe that the growth into the temporal bone of the skull was causing all the pain.
You certainly need more scans, and if CT is again clear, perhaps a PET scan or MRI to ensure nothing is missed. One of the many ENTs I saw prior to diagnosis said that many causes of ear pain are never found. Luckily I was persistent in seeing doctors and requesting referral until someone explored thoroughly to find this cancer. You are your own best advocate,and you call the shots so if you aren't getting answers, request a referral to a larger teaching hospital or referral cancer center. We travel 10 hours to Mayo Rochester MN for their excellent care and continue to do so 13 years into this cancer journey. Do you have such a facility in your area?

Haven’t had any real pain, but fullness in ear comes and goes. I’m also experiencing headaches resembling sinus headaches. I haven’t experienced any throat related pain which is encouraging from a “reoccurrence” standpoint. A little sidenote is I’m an habitual teeth grinder and have noticed within this last week that my jaw is clicking just a tad. I’ve never experienced TMJ before to my knowledge.

That is correct. The first PET didn’t reveal anything, then I requested a referral to Mayo in Rochester which is 10 hrs away for me also. I live in Oklahoma. Mayo then did a PET that yielded a negative as well. We all knew it had metastasized to my enlarged lymph node in my neck. They suggested I have a surgery that they felt would reveal the cancer. After a 9 1/2 hour surgery, they removed around 10 lymph nodes that were cancerous and cleaned out the margins. They felt that they removed all cancer but suggested I go through some light chemo and a 2 week (twice/day) radiation treatment plan. It was different but they had been seeing positive results, especially from HPV induced SCC.

As stated above, I’m an habitual teeth grinder and there’s a possibility that this could be the reason for my ear pain. Appointment is scheduled for this Wednesday, but heavy snow and ice in the forecast. Will likely postpone my appointment, which is annoying to say the least. I too feel that I just can’t trust the opinion of every doctor, although my experience with Mayo has been fantastic. Doesn’t get better than a tertiary care center. Seems so much more thorough and efficient.

Coachlowe,
For the teeth grinding I would definitely get a mouth guard to wear when you go to bed at night. I picked up teeth grinding from stress from my first cancer diagnosis for tonsil cancer back in 2008. Thanks to my dentist noticing at one of my annual teeth cleanings that my teeth were being grinded down and suggested then the mouth guard- you can get one online or Walmart for like $15 or one from your dentist office but that will cost you some bucks.

For the ear discomfort, it could be that you have some lymphedema going on which I also picked up from my most recent Tongue cancer surgery in 2024 that included a modified neck dissection for lymph nodes on the same side. I go to a lymphedema physical therapist to help with that, and she is great. In addition, it helps with my neck pain and stiffness on tongue surgery side too. It's funny, when my neck pain and ear discomfort is minimal, it is a lot easier for me to swallowing when I eat or take pills.

Hope this helps. Good luck on the journey.

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

Thank you for the perspective reminder, Jody! I need that from time to time.

Last Movember I had a tonsillectomy and neck dissection for HPV+ cancer. Ear pain was the symptom that lead to diagnosis. Urgent care, two dentists and an ENT misdiagnosed it as TMJ. I went to a PT who specializes in TMJ and he said he does not see ear pain like mine in his cases and told me to pursue it harder. I went to a different ENT who expressed her view as “when I see persistent ear pain and can’t see where it’s coming from, I go find the cancer.”
If I experience ear pain again, I will doggedly pursue it and not let any provider convince me otherwise. If I had done that, or seen the other ENT first, I’d have diagnosed my cancer 8 months earlier.
Good luck!

Did the pain hurt or was it discomfort? I ask that because mine isn’t really pain. My ear just feels full. Not much pain at all. Also, did you have any scans done during that time of uncertainty? My first go around, multiple PET scans did not reveal the primary tumor. They had to do exploratory surgery (neck dissection) that lasted 9 1/2 hours.

Mine was definitely pain and now feeling of fullness. I had a CT scan done that was read as negative (though there was a small amount of incongruence that was dismissed). My next diagnostic was a biopsy of tonsil tissue and that found the tumor.