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.
Original Post
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 Coffee
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
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" Banghead

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
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.
Hi Mona... WELCOME!

I'm so sorry to hear your brother's cancer has returned. Ironically, my husband's ear pain is back too. He had a bad episode this past Sat. night. I am not surprised because just last week his doctor discovered a red spot way back in the throat area. It is considered "questionable" and he has to return for another look in a month. I am so afraid it is a recurrence.

My understanding is that treatment options will be limited the second time around (if the cancer occurs in the same area) because they cannot re-radiatate (if radiation was administered initially). Chemo could be an option, I guess, but is not known to be particularly effective by itself for head/neck cancers. There is a drug called Erbitux that our website medical specialist, Dr. Joshi, described under the "Medications/Treatments/Procedures" forum. You might want to go there and read his posting. I think the drug is new, but showing some degree of promise in certain cases.

I hope Dr. Joshi will read your post and also respond to your question about new treatment options.

I am sure you are heavy-hearted for your brother, Mona... but KEEP THE FAITH! There is ALWAYS hope. My thoughts and prayers are with you all. If you are a woman of prayer yourself... please also remember my husband, Danny, in your private time with the Lord. I would really appreciate that. I hope you will post new messages as you learn more and your brother's medical team formulates a plan for his care. My BEST to your brother... and you.

From my heart,

Melanie
Hello Melanie I'm sorry to hear that Danny is having further trouble after seemingly being so well. You have given so many of us such a lot of love, prayers and support and now it is our turn to do the same for you both. Let's hope that the fact the doctors don't want to see him for another month indicates there is nothing 'sinister' going on. The waiting is always the worst time. I will say to you what you always say to others....be positive! With love and prayers from 'this side of the pond' Bx
I had ear pain and throat pain on the right side. They took out 15 lmype nodes in my neck. Then I had 29 radiations and 3 chemo one each week for three weeks . A tumor was hidden and never found(I also had tongue cancer 7 yrs ago when they took the cancer with surgery.It was so painful at first)This last cancer I thought they got it all but went to dentist for a cleaning .I told him I had tongue pain an now back to Duke university for further examination. All I can do now is pray It hasn't come back. I will know Wednesday the 24th of April 2013.Stay positive. I am sure by now you know the outcome.wish m luck.
Why has it taken me so long to find this site? I suppose I was asking the wrong question... I was really interested to hear the ear ache theory. I had been having stabbing pains in my left ear since late in 2008 but no one could find anything wrong. This cancer could have been diagnosed in 2011 as a lymph node was swollen, but went down - however it didn't quite disappear and I was producing all sorts of little cysts throughout 2011 which were unexplained and had never happened before and haven't happened since. When diagnosed I searched my mind for the 'trigger' point, which was in September 2008 when a friend(?) gave my husband and I VERY nasty colds. It very nearly killed my husband, who suffered progressive MS, so I was fighting for him and trying to cope with it myself. My husband died in February 2009 but I don't think my system would 'let down' sufficiently to let the cancer take hold.
I underwent major abdominal surgery in 2010 and 2011 was too hectic, but as soon as I started to relax a bit in 2012 - bang! The lymph node blew up and the lump at the left base of the tongue was found - yes, the ear stabbing was still going on. Diagnosis of squamous cell cyst diagnosed in June 2012. It was a stage 4 by now, but I was told it had 'hit the body's firewall' - whatever that may mean.
I underwent three sessions of chemo (it should have been six but they decided that I was going to be allergic to sisplatin and changed me to carboplatin, which brought it down to three - still nasty) and 33 sessions of radiotherapy. I had a PET scan in early December 2012 which proved clear. However, I have VERY little saliva so eating is not easy, Everything has to have a lot of gravy and meat needs casseroling to death. Certain fish are good (cod, haddock) - others uncopable with. Can't eat fruit (too acidic) but can do some veg. Suffer stiffness and soreness through throat and neck (even a year after the end of treatment) and still get stabbing pains in the ears (which I read can be down to treatment) - but had a check up two weeks ago and all appeared to be fine.
If anyone has ideas about the dry mouth, suggestions welcome. Sipping water is no good. Water hydrates, but it does not lubricate. Tonic water is better. Oral gels useful.....
Dear Melanie,
I have just been diagnosed with tongue cancer just had my biopsy a week ago and go to the the ENT tomorrow for my post op check up and the next step. I too have been experiencing unexplained left ear pain for years as well as sore throat, difficulty swallowing and feeling like I had a lump in my throat. It wasn't until a few weeks ago that I found a painful lump in in the base of my left side of tongue. After my biopsy the ear pain is even more painful, more then the biopsy itself.
I am interested to see what the ENT says.
cause him and another ENT plus dentist and Family doctor didnt know why I was having ear pain.
Hopefully we have caught this early.
Hi Rita53

Welcome to the club no one wants to join; I'm sorry that you qualify for membership.

Wow. I only had "referred pain" in my left ear for a few months and it was a b***h! I can't imagine putting up with it for years. When you meet with your doctors for your long-awaited results and game plan, do not go alone. It's going to be a long and nerve-wracking day, and you will probably not feel like driving. Also, it's helpful to have someone with you to ask any questions you might have forgotten, and to take down answers to your questions.

The folks here on the site are wonderful and really helpful. I hope you find what you need.

Let us know how it turns out.


Julia
Thank you Julia for your response, I heard that radiation is very tiring, even after the first one??? Also my ear pain was dull and aching for the most part but when I would swallow I would get a stabbing pain,and I still have it, like I just want to pull something out. I called my ENT surgeon today and he said that it should subside. MMMM we shall see?
Hi Rita

All I know about rt and chemo is what other people say about them.

Is there any way you can be seen by a head and neck specialist? It sounds like you're having some doubts about your ENT. You'd probably have to go to a teaching hospital.
I am 2½ years post RT and chemo. My referred problems tend to 'move about' - first one side, then the other. Now it is on the right which is the side that wasn't nearly as badly affected. The lump was right at the back of the tongue (not findable during any normal examination by either doctor or dentist) and on the left hand side. I had no idea it was there and the first sign I had was swollen lymph gland on the left and only slightly on the right. I am told I am one of those 'unfortunates' who suffer after effects (what about everyone else suffering after effects, I ask). Anyway, the pain is now back to the right side and stabbing into my right ear. If there is any wind at all I have to keep that ear covered, otherwise the pain is excruciating and I suffer for the rest of the day - it really has to be got quite hot before it calms down. I am to be seen wearing sheepskin earmuffs on a perfectly sunny day. I know, I get odd looks. Don't care - I dress for comfort, not for style!

At the end of all that I am told that it is all neurological and, apart from continuing with too many painkillers, nerve blockers and anti spasmodics, there is nothing that can be done. Great...

Life's a bitch - then it has puppies.

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