Hello All.

For about seven years prior to my husband's base of tongue squamous cell carinoma diagnosis, he suffered with intermittent episodes of right ear pain, often starting out not too badly, but then progressing in intensity until he could hardly stand it. Sometimes the pain radiated down the right side of the neck as well. It would be so intense some evenings, that even the external ear would become painful and actually hot to the touch.

Visits to regular MD's and his ENT did not get to the bottom of his ear pain. They blamed it on migraines (although my husband had never been diagnosed with migraines). They blamed it on sinus trouble, giving him something new to spray up his nose or a new prescription every time he went for a check. Early on, the ENT even sent my husband for a CT scan, but it showed nothing (and this was seven years prior to his cancer diagnosis). Back then, I did not know that the unexplained ear pain (that would not respond to all the things doctors tried) could actually be a sign of cancer. Now I am acutely aware that his poor right neck nodes were doing their darndest to fight a tumor on the tongue base, although no one knew at the time. I'm certain now that, every night when he sat holding his head in his hands, groaning with pain... it was his lymph nodes fighting the tumor... plus the cancer eventually spread to them too. As I said, my husband was finally diagnosed with his tongue cancer (a tumor to the RIGHT of midline, with metastatic RIGHT neck node disease... seven years after the pain in his RIGHT ear presented.) Even though our ENT disagrees, I know in my heart that my husband had cancer way back when we first visited this ENT seven years ago for the ear pain. There is no other explanation for it. Although the ENT admits he never could figure the reason for my husband's longstanding ear pain, he maintains even now that it was "completely unrelated to the cancer". Anyway, I cannot help but grieve over the fact that the cancer could have been caught in the early stages, instead of stage four (as is the determination for my husband's cancer at diagnosis, now one year ago). It is water under the dam, but I just hope that our ENT will work harder with the next person who comes to him with ear pain that he cannot get to the source of for years on end. When meds prescribed for headaches, sinuses, etc. do not quiet the ear pain, doctors (ENT's) should continue to explore, and SCOPE DOWN TO THE TONGUE BASE!

My question to anyone with this type of cancer... Did you also experience pain in the ear that could not be explained prior to receiving the tongue cancer diagnosis?

Any responses will be greatly appreciated.

THANKS!

Melanie


Vinod's note: the topic title was amended to include 'ear pain' to allow better searching.

This message has been edited. Last edited by: Dr Vinod K Joshi,

Dear Melanie: I think you are abolutely right abut the ear possibly signalling the problem. I remember when I had follow-up check-ups at the University of S. Alabama in Mobile that my ENT checked the inner ear and eustachian tube from the throat to the inner ear every three months for any spread of the cancer. However, I never had extreme ear pain and my mouth cancer was quite visible at the front base of the tongue. I suspect that doctors have not been prepared for the amount of head and neck cancers that have presented themselves in people like me with no history of smoking or habits leading to cancer and being young at the time. As such cancers were considered to be illness of the elderly or people with extremely bad habits. Cathy

Hello Melanie

While ear pain can be one of the ways a mouth cancer presents itself, it is more commonly related to a temporomandibular disorder with myofascial dysfunction related to parafunctional activity whisch is often undiagnosed and blamed on 'migraine.' If your husband's upper and lower incisor teeth are worn (with flat edges that can mesh), i would suspect myofascial pain as the cause fort the ear pain.

Best wishes
Vinod

Sorry to interrupt the post,Dr Vinod I sent you a private message a couple of days ago, I'm not sure if you got it, could you let me know? if not I can send it again.

Tracey

Hello Tracey

I have been away last few days, hence delay. Have replied now.

Best wishes
Vinod

My husband was also misdiagnosed, but only for about a year. Yes he had ear aches and sinus pain. He was given antibiotics several times for sinus infections and then allergy medication. It was only when I insisted that he was not having sinus infections, over and over and should see an ENT specialist, that the tumor was discover at a
second stage with no lymph no developments.

Hi.

Thank God for YOUR intuitiveness and persistence! Otherwise, the cancer may have indeed progressed undetected to the most advanced stages. I'm SO glad your husband's did not metastasize into the lymph nodes. Thanks only to YOU, a devoted wife, it did not.

There are some brilliant physicians (including ENT's) in our country today, but I'm afraid that some (many?) do not know about (or underestimate) the correlation between long-term unexplained or persistent ear pain and oral cancer. I just wish they all knew to start checking the essentially-hidden tongue base (or other H&N areas) for tumors in cases where ear pain remains an ongoing problem and does not seem to be responding to sinus and allergy meds.

We all know that diagnosing oral cancer in stage one or two (particulary base of tongue) can literally mean the difference between life and death.

Thanks for sharing your husband's experience. I hope he is doing well now.

Melanie

This message has been edited. Last edited by: Melanie,

Well my husband certainly didn't complain about any ear ache in the 6 years we were together.

It was only when he started having pain in the back of his mouth that got worse so it was keeping him awake at night that we sought medical advice. Even then he thought wisdom teeth and 3 medics said a large mouth ulcer before tongue cancer was mentioned.

One even called a colleague in to "have a look at this ulcer on his tongue. I've never seen anything like it. It looks like we are going to need some antibiotics to help clear this up"

Needless to say, when cancer of the tongue was diagnosed 2 weeks later (as we sought a second opinion), these medics were the first people we told. Hopefully they are fully aware now and won't make the same mistake again.

Kezia

What I think is very very sad is when I read of the "awareness weeks" that spring up over the year asking the general public to check for lumps, check your balls, how's your waterworks, look for crusty moles (I have some in my back garden) ETC!
This is, of course, to get an early diagnosis and so early treatment, better prognosis - IN THEORY!!
What happens usually is too much "watchful waiting" in many cases - mine being one of them.
People get lead down by the garden path by incompetent registrars and the net result is a more invasive cancer on diagnosis. More invasive surgery and other treatments are carried out.
It's like shutting the door after the feckin' horse has bolted. Later diagnosis leads to more costly treatments surely! Time off work is costly - benefits etc - longer stays in hospital. IT ALL ADDS UP.
Earlier treatment must bring about less costs in the long run. Is this obvious? I would have thought so.

Ah well - will they ever learn!

A cynical Tony K

PS - I nearly forgot- Always pay for a second opinion from a "proper consultant" . Do not trust the diagnosis from these "still wet behind the ears" junior doctors.

Melanie,

I missed this post initially as I first presented with acute earache on the left side which progressed to acute hoarseness within three months. I insisted that the GP refere me privately to ENT and having explained all my symptoms including earache he looked down my throat and found the tumor. At that time he would not commit to cancer suggesting it couild be polyps but had me in for a biopsy the following week which confirmed cancer. I was operated on within 3 weeks of the biopsy that was in May 1995. I did have a history of earache however goinbg back to childhood and I would not have associated that myself directly with carcinoma of the larynx. Coincidence, I wonder??

Hi DWR...

Very interesting. From all accounts, I do believe that the unexplained ear pain is a factor in quite a few cases of oral (H&N) cancer. As for the ear pain as a child... I would say, yes, probably just a coincidence... UNLESS the childhood earaches were always on the left side (as was the case before you were diagnosed with the cancer). If it was always left-sided as a child, then I do wonder too????

Melanie

Just an update on this ear pain subject...

A couple months ago, my Dan experienced the right ear pain again, and then another episode about a week later. (This was the first right-sided ear pain Dan has experienced since being treated for the cancer and declared in remission. Of course, before the tongue cancer diagnosis, the right-sided ear pain had been a frequent occurrence and something I've since adamently associated with the cancer (which was also right-sided). Naturally I was panicked thinking the cancer may be back and got his ENT to schedule a CT scan. Turned out all clear at the tongue base and neck nodes. So that's when the ENT decided it may be TMJ (also Dr. Joshi's suggestion) and set Dan up for a few visits to a physical therapist who specializes in TMJ. Although very relieved that the scans showed no new cancer, I was still a little skeptical about it being TMJ. He has not had any further ear pain episodes but, honestly, I don't know if that is just coincidental... or if it really was TMJ that responded to the physical therapy. I suppose time will tell.

Anyway, the most interesting tidbit of information I received recently was from Dan's radiation oncologist. During the time that we were waiting for the results of Dan's CT scan, I was so anxious about the possibility of recurrence that I called his RO to ask her opinion. She agreed with our ENT that the right-sided ear pain Dan suffered for about seven years prior to his SCC diagnosis could NOT have been related to the cancer. She said there is no way that the cancer could have been present (even at the cellular stage) for seven years prior to the day it was actually discovered. She explained squamous cell carcinoma is more aggressive than that. According to her, it would be highly unusual (next to impossible) for SCC to exist even more than one year before becoming symptomatic enough to be discovered and diagnosed. (Seven years would be unheard of.) However, she does admit it is "interesting" (and "usual") that Dan's ear pain was ALWAYS right-sided all those years... and then his tongue tumor (seven years later) was also right-sided (located to the right of mid-line) and the lymph nodes affected were on the right side too.

When the RO explained all that... I began to question my correlation between Dan's ear pain and his cancer. If the ear pain had been occurring just a matter months or a year before the cancer diagnosis, it would make sense... but seven years later... I guess not -- (If his RO is right that SCC could not exist for that long before making its "debut").

Hmmmmmmm.....
Just "food for thought" folks!

Melanie

This message has been edited. Last edited by: Melanie,

There was a 1 in 2 chance of the muscle pain (related a TMJ disorder) being on the right side. So I would say - coincidence.

Vinod

Melanie,

As you ask my childhood earache was always left sided and my Doctor then suggested related to glandular fever, I would have at least two attacks each winter.

It always ended with a scab forming on the ear lobe after the lobe becoming red and itchy as the earache itself subsided, but the actual ache was deep in the ear like what you might get touching your eardrum with a bud getting out wax, making me scream in pain occssionally.

These episodes disappeared post 11 years when I went to secondary school.

I just found this site and needing information please !!! my brother was diagnosed and treated for tonsillar cancer about 1 1/2 yrs ago. About 10 months starting having swelling in neck which has progressed to severe ear, jaw pain. Multiple specialists told him it was nothing !! Now starting treatment for metastatic cancer (wrapped around his carotid, jugular and parotid gland) SO ear and jaw pain seems to be a big red flag. Is there anything out there as far as treatment that is newer, or showing good response ??
greatly appreciate any info.