Good afternoon,
Im a 23 year old male and iam worried that i may have oral cancer.
It all began September of last year i felt a lesion on the left back side of my tongue and so was very concerned as a result since then I have seen a total of 6 ENTs 1 oral surgeon and 1 dentist...I had an excisional biopsy done of the area which came back benign and it read a chronic inflammation of the salivary glands the ENT who performed it assured me that it wasnt oral cancer yet was going to perform the biopsy in order to give me some piece of mind, however as she was doing it i told her to extract tissue from the bump i felt and she said the following "I've been doing this for thirty years kid i know what iam doing" and so now im afraid the biopsy is not as reliable because I can still feel the small lump...all other ENTs have taken a look at it felt it put their fingers inside my mouth and also assure me that it is not cancer and i should have nothing to worry about...I had a cat scan done of my throat which stated that i had inflammation of the glands about 6 mm and the ENT said not to worry that it was normal...lastly i was seen by an ENT at the hospital who stuck a camera through my nostril and said I have severe acid reflux and my voice box is severely irritated which i know and have been taking medication for yet it does nothing to ease my pain...after that i saw a dentist who referred me to an oral surgeon the oral surgeon took a look i showed him the results of the biopsy and after seeing the lesion stated that he was convinced is not oral cancer i asked if he could remove the lump and he said that there was nothing to be removed that if he did so he would be cutting into my tongue.....the reason for my worry is that ive experienced and continue to experience symptoms of oral cancer such as ear pain that comes and goes constant throat pain to the left side although it doesnt hurt to swallow chew or eat i have chest pain on my right side and the doctors say that it can all be attributed to gastric acid or the reflux i have, yet im not convinced because the medication has done nothing... i dont have health insurance so finding an accurate diagnosis has been quite costly...my only last option is to go back to the ENT and have an endoscopy done so they can check the structures on my throat.....what appalls me is the degree of certainty these specialists have when they tell me its not cancer its reached a point where they tell me that i want to be told i have cancer which i find ridiculous...I JUST DONT KNOW WHAT TO DO ANYMORE IM AFRAID I HAVE CANCER AND COULD BE DYING DUE TO THE AMOUNT OF TIME THAT HAS ELAPSED I NEED SOME ADVICE AS TO WHAT STEPS TO TAKE NEXT...PLEASE HELP

Find a top ENT who deals specifically with oral cancer. You are (unfortunately) not too young to have it - our youngest member was 18 when diagnosed and he - like many others here didn't have any precursors for it. I'm one of them. And frankly what you are saying rings very clearly with me - I had issues with my left oral tongue (at the back on the underside) this went n for some time - I saw an ENT - he biopsied it saying - well its all red, but I don't know here to take the biopsy from as its a large area. I had no lesion just a lump which he would have felt if he'd palpated. My biopsy came back inflamed tissue. He blew me of didn't even suggest a follow up. 18 mos later it became super painful (a step up from really painful). Another ENT biopsied it again. DX - oral cancer.

Please don't freak - this doesn't mean it's cancer, it could be major irritation for your reflux, but gdor your own mental ease you need a definitive DX either way. Do not let them blow you off. The demographics are changing for this disease,

Best of luck and let us know what happens.

Thanks for your reply i greatly appreciate it.....
Ive been freaking out thinking im gona die soon due to the fact that the ENT's ive seen all six of them along with the oral surgeon tell me that i shouldnt worry and ive been looking for an answer for about 6 months now and they say its nothing that its all acid reflux and that they see around 10 to 15 oral cancer patients on a daily basis and my lesion doesnt look anything indicative of oral cancer yet the small lump is still there and now its beginning to turn white...its really small and its on the underside and the back of the tongue looks inflamed as if its swollen and i mentioned that i was afraid it can be a tumor and they said that if it was a cancer tumor it would grow by now...they said to rest a sure its not cancer....i hear a crack in my throat when i cringe my neck its really weird thats been ongoing Ive told every specialist that im afraid its oral cancer and explain all my symptoms and they tell me its not that im going to be fine and not to worry... i also went to a dentist hence i felt tooth sensitivity on that same side and he said that he didnt see anything abnormal in my xrays which were forwarded to the oral surgeon i was referred to....it bothers me that they cant find a definitive diagnosis and i continue to feel this way thats why i dont know what to do....
The ENT who performed the biopsy has been a practicioner for 30 years she is also a head and neck surgeon and was actually referred to her by the receptionist from a different ENT i saw hence the receptionists husband was being treated for cancer and the ENT who i consulted had diagnosed him and was currently treating him...
THE PROBLEM I HAVE IS THAT EVERYTHING IS OUT OF POCKET SINCE I DONT HAVE HEALTH INSURANCE SO THE BIOPSY AND CAT SCANS IVE HAD TO PAY FOR.

DO YOU THEN SUGGEST I GET ANOTHER BIOPSY AND IF SO WHAT TYPE IS MORE EFFECTIVE? I LIVE IN LOS ANGELES CALIFORNIA AND THERES TONS OF ENT'S I DONT KNOW WHO TO GO WITH. AND THEY ALL TELL ME THE SAME THING SINCE I FIRST NOTICED THE LESION IVE LOST 20 POUNDS I CANT SLEEP IM DEPRESSED FRUSTRATED MY PARENTS THINK IM MAKING STUFF UP AT TIMES I FEEL LIKE JUST ACCEPTING WHATEVER IT IS BECAUSE WITHOUT A DIAGNOSIS FROM A SPECIALIST I CANT GET ANY TREATMENT......I WILL LET U KNOW....THANKS VERY MUCH

Thanks for your reply i greatly appreciate it.....
Ive been freaking out thinking im gona die soon due to the fact that the ENT's ive seen all six of them along with the oral surgeon tell me that i shouldnt worry and ive been looking for an answer for about 6 months now and they say its nothing that its all acid reflux and that they see around 10 to 15 oral cancer patients on a daily basis and my lesion doesnt look anything indicative of oral cancer yet the small lump is still there and now its beginning to turn white...its really small and its on the underside and the back of the tongue looks inflamed as if its swollen and i mentioned that i was afraid it can be a tumor and they said that if it was a cancer tumor it would grow by now...they said to rest a sure its not cancer....i hear a crack in my throat when i cringe my neck its really weird thats been ongoing Ive told every specialist that im afraid its oral cancer and explain all my symptoms and they tell me its not that im going to be fine and not to worry... i also went to a dentist hence i felt tooth sensitivity on that same side and he said that he didnt see anything abnormal in my xrays which were forwarded to the oral surgeon i was referred to....it bothers me that they cant find a definitive diagnosis and i continue to feel this way thats why i dont know what to do....
The ENT who performed the biopsy has been a practicioner for 30 years she is also a head and neck surgeon and was actually referred to her by the receptionist from a different ENT i saw hence the receptionists husband was being treated for cancer and the ENT who i consulted had diagnosed him and was currently treating him...
THE PROBLEM I HAVE IS THAT EVERYTHING IS OUT OF POCKET SINCE I DONT HAVE HEALTH INSURANCE SO THE BIOPSY AND CAT SCANS IVE HAD TO PAY FOR.

DO YOU THEN SUGGEST I GET ANOTHER BIOPSY AND IF SO WHAT TYPE IS MORE EFFECTIVE? I LIVE IN LOS ANGELES CALIFORNIA AND THERES TONS OF ENT'S I DONT KNOW WHO TO GO WITH. AND THEY ALL TELL ME THE SAME THING SINCE I FIRST NOTICED THE LESION IVE LOST 20 POUNDS I CANT SLEEP IM DEPRESSED FRUSTRATED MY PARENTS THINK IM MAKING STUFF UP AT TIMES I FEEL LIKE JUST ACCEPTING WHATEVER IT IS BECAUSE WITHOUT A DIAGNOSIS FROM A SPECIALIST I CANT GET ANY TREATMENT......I WILL LET U KNOW....THANKS VERY MUCH

First, calm down!!!!! Its highly unlikely you are in the stages of dying at this point. Im not dismissing your symptoms at all. By being upset it does not do one thing to help your situation. In fact, being upset actually makes thing worse, it paralyzes you with fear and that makes it hard to think clearly. All that stress isnt good for your body and your mind is working on overtime with "what if".

It should be some comfort to you that the biopsy came back negative. There are all kinds of things that can produce similar symptoms, like TMJ or wisdom teeth issues, an infected tooth or even a throat infection. You didnt mention if you were a smoker or using tobacco. There are over 50 known cancer causing additives in tobacco. There are many irritants which can cause all kinds of issues in a persons mouth. If you use tobacco in any form, please stop immediately.

I suggest finding an ENT who specializes in oral cancer. Not all ENTs do, so mainly put tubes in kids ears. The rule goes like this, any sore in your mouth that has been there for 2 weeks or longer should be checked by a professional. Only a biopsy will tell for sure exactly what the lump is. Since one was already done, maybe they need to go in and do a deeper biopsy. Since none of us here are doctors with years of medical training or have your whole medical history plus you in front of us, its really hard to say over the internet if any of these doctors have done a truly thorough exam. Unfortunately, being young does not rule out getting an oral cancer diagnosis. We have had a few members here who have been under 23 years old. Finding the right ENT and having a complete check up (possibly including another biopsy) should be enough to ease your mind. I agree with Cheryl, it could be all from the acid reflux. At some point you will have to put your trust in one of the physicians you see. You have seen quite alot of doctors and had a biopsy done so is it possible that all this is simply acid reflux? I would give it one more shot with a ENT associated with a major cancer center and put your faith in them. Hopefully what you are going thru turns out to be nothing as serious as oral cancer.

Good luck!!!

Hi - I would agree with Christine - do take comfort in the negative report but also see one more ENT, and ask them what they think. I would keep pushing until you get an answer or you can wait and see If it gets bigger. Some tumors are very slow growing some are not. I'd had mine for almost 4 years before I was dx'd, others have tiny lesions that are highly aggressive and move quickly. Based on the fact you've had it for 6 months with little change it sounds like what ever it is is slow moving. So you're not dying though I do understand your panic.

It's too bad this is out of pocket for you.

Thank you for replying and for the advice you have given me thus far is very helpful and greatly appreciated...I agree that perhaps a second biopsy of the lump would be the way to go i had cancelled an appointment for an endoscopy due to the lack of money but iam planning in getting it done once i find employment hence i just graduated from a four year university...in regards to finding a great ENT who specializes in oral cancer in the Los Angeles area do you believe that If i were to call the OCF locted in New Port Beach they perhaps can offer me some numbers of Doctors i may consult?...theres numerous ENTs in Los Angeles and to find the right one someone who will pay attention and take all your concerns into consideration is quite difficult and a task...Cheryld do you happen to know what kind of biopsy you had done the second time around?


And well right now i have to wait because i have no money and thats my biggest worry like you mentioned the "what if"?
And its worrysome becuase i did smoke for about two years was only a social smoker perhaps id say 4 to 6 cigarettes every week and a half or so and i did drink, however i quit smoking last july since then i havent had one puff.
Its startling to know that even those who have never smoked or drank and lack any precursors have been diagnosed with oral cancer..
Thanks Again for yor replys

I forgot to mention that my desperation got so out of hand I also saw two otolaryngologists In Tijuana Mexico due to the significant low cost of a consultation who also stated that it was not cancer that it didnt look anything indicative of that despite having described my symptoms to them one of them is a top head and neck surgeon in Mexico has had 25 years in practice...they along with a general doctor assured me that it was nothing and i was overthinking the situation and that i wanted to be told i had cancer which really angered me and in spanish he proceeded to say look your a young man you have nothing, go out and enjoy life.... and yet these symptoms persists which is why i think im going crazy...the doctors out there all said the same thing they told me here that its caused by acid reflux and i was told that i have a very severe case of it as a 23 year old....

Since you mentioned you are 23 years old have you had the Guardisil series of shots yet? This originally was for young women to prevent cervical cancer. This is now available to all young people between the ages of 12 and 26. It protects you against strains 16 and 18 of HPV which are known to cause oral cancer, anal cancer, penile cancer, genital warts and cervical cancer. If you have not gotten these shots, please do so immediately.

PS.... Do yourself another favor and stop seeking medical help from Mexico. There are many money making schemes that go on there which are not medically safe.

Hi there - .both my biopsies were excisional, they took a chunk of tongue the first guy just didn't go deep enough or hit the wrong area. I'm not sure what info ocf could give you re: drs. Someone here might have a good recommendation. I'd offer help but I'm Canadian. I would think that even someone at the top of their game in Mexico might still not be as good as someone in the states though that would depend on where they studied. Wait a bit keep an eye on it for a few weeks, if it gets worse or doesn't improve then go for another biopsy.

Best of luck

thanks I have taken all three gardasil shots unfortunately there are many strands of that virus and there is no test for men to check whether or not he has the virus...and thanks for the advice in regards to Mexico i think i did that out of desperation and lack of an accurate diagnosis from doctors out here...

Cheryld thanks i myself had an excisional biopsy done the first time around and its been about three months since i had it done. Im going to consult a different ENT and demand a second biopsy perhaps i should leave and not mention the results of my first biopsy hence maybe they feel as if a second biopsy is not necessary relying on the results of the first. Perhaps thats a mistake I have done. I just really hope its not cancer. I had a laryngoscopy done at the hospital and the doctor said that all he saw was irritation of my throat and voice box due to the acid reflux and the cat scans seemed fine...but then im concerned because the small lump remains its not going anywhere can it also just be a benign growth...i worry because it seems that having a lump in the tongue is automatically indicative of oral cancer.
Thanks for the reply

HPV number 16 and 18 are the ones to cause cervical cancer, anal cancer, genital warts, and penile cancer. The guardisil shot protects against strains 16 and 18 so you are in good shape. Glad you have gotten the shots.

Hi again. Try not to worry a tongue lesion or tumor (to me a lesion is more of an open sore or damaged looking area) necessarily always being cancer. It's not the case. My concern is leaving something for too long then finding out far too late that it is cancer. That's why I always push people to get an answer.That said do be forthcoming with your next dr. basically say, I had a biopsy a while back. The problem persists, I would like another biopsy perhaps remove the lump period so there is no need for worry. If you go on about drs not listening they will tune you out and chalk it up to some paranoia. Its gone on long enough you need an answer. best of luck

Thanks again for replying..
then i wouldnt describe it as a lesion id say its more like a very small lump hardly visible unless its touched and felt along with some swelling of the tongue that has remained...Cheryl your absolutely right about drs thinking its paranoia...the oral surgeon i went to which was the last doctor i consulted i told him that i had a biopsy and asked if i could have the lump removed or a second biopsy and he said if he did so he would be cutting into my tongue and that what i had didnt look like it was cancer he had many certificates on the wall and seemed quite knowledgeable in his field...Today I called a different doctors office and im going to have to pay 250-350 dollars for consultation and 325 for a fine needle biopsy procedure its ridiculous how pricey it is to have a consultation and procedure done...im going to have to wait however, in order to save up that much amount of money....

HI Fhdez

I think that there has to come a time when you have to trust 6,7 or 8 highly trained healthcare professionals and accept that you do not have oral cancer. There are certainly cases where the doctors miss a tumour but it's not usually when the person has seen upwards of half a dozen specialists - some of whom see lots of oral cancer patients. There needs to be a point where you have to believe them and try to settle down. Keep an eye on your lesion and if changes (as in doubles in size or changes colour or looks different to other parts of your tongue), then you can take yourself back to the doctor.

Remember this: oral cancer is quite rare and extremely rare in a 23 year old who has a very limited smoking history.

Just so that you know ... a doctor describing something as a lesion is healthcare professionalspeak for anything they can see that shouldn't normally be there (an abnormality or injury). Lumps are lesions and ulcers are lesions. So are gashes, cuts and tumours. It is a pointless word for a patient and as if you hear it, ask the doctor what they mean and ask them to describe it.

Thanks for the reply klo i appreciate it...
thats exactly how i feel, that i need to accept whatever it is they tell me which is that i have severe acid reflux...after seeing 6 ENTs 1 oral surgeon and dentist and having been told that they are absolutely positive it isnt cancer im sure i should feel that way hence one of them did say that they see about ten to 15 patients with oral cancer on a daily basis and my case was nowhere compare to what they see...However, what bothers me is that the lump remains and the ear pain along with throat pain and tooth sensibility known to be symptoms of oral cancer are present on the same side where the lump is located and the medication for the acid reflux doesnt ease or provide any significant relief to these pains. the constant feeling of something cracking or popping in my throat is weird and unexplainable and it adds to my concern and fear of having oral cancer.

I really appreciate ur advice it really helps thanks for hearing me out and taking the time to reply.
fhdez

Finally a Fine needle biopsy is only as good as the tissue it hits, if you do have a biopsy in the future it should be excisional. best of luck - try to move on.

I have to agree with KLO. Time to move on. You have been seen by so many Drs. Had the area biopsied , how many times?
Please be reassured and move on with your life now.

Cheryld thanks for the advice i appreciate it the only reason why i considered the fine needle biopsy is because i heard it's more precise and reliable in detecting cancer because it goes further into the skin but excisional will do as well....what bothered me about the ENT who performed it was that by looking at the lump and area of my tongue she said it wasnt cancer and went ahead and did it because i demanded it yet she said that she was going to have it done just to give me some peace of mind but that it looked non cancerous and thats from a Head and Neck ENT doctor who has 30 plus years experience yet i thought she was going to take tissue from the actual lump but she removed tissue around the lump or just above it so i dont know whether to rely on that biopsy result because of that. then again i assumed she knew what she was doing as she did tell me, "kid ive been doing this for many years youre not going to tell me what to do" so i kept quiet.

i was also wondering are the symptoms of ear pain or throat pain when it happens to be oral cancer always present like continuous or do they come and go and are more severe on certain days.?

And I will definitely try to move on
Thanks

They don't want to cut directly into the suspected tumor, so not to chance spreading any cancer if it is, and so they take a biopsy from the edges. If I check with Dr. Google for any one of my ailments, I'll probably come up with hundreds of suspected illnesses, and diseases. I guess you will only keep finding what you keep looking for or into that may not be there.

PaulB thanks for the clarification i thought that a biopsy entailed removing tissue from the actual lump otherwise whatever tissue would comeback benign and that was my concern and led to my belief that the biopsy was not reliable. also the lump is white in color n ive been given medication for acid reflux everytime i visit a specialist they attribute the cause of the lesion to acid reflux.

Thanks for replying

YW. Now you have a diagnosed condition to work on, GERD, gastroesophogeal reflux disease, aka acid reflux, which is caused by many things, is often reversible, and should keep you busy. Good luck.

In regards to the ear pain, I had unexplained ear pain in my left ear for a really long time prior to my diagnosis, but it was unrelated to my cancer (different period of time). I had a specialist check it out, and he couldn't really find a reason for it.
Also, I think if you had the spot for such a long period of time, by this time a doctor would definitely be able to identify it if it looked like cancer; I ignored my lesion for a while (started out pre-cancerous lukoplake and eventually developed into cancer), and when I finally saw a dentist about a year after the original symptoms started he (and the oral surgeon who took my biopsy) immediately was pretty certain it was cancer, and I didn't even suggest/suspect that's what it was.

Hopefully you can get some peace of mind!

PaulB thanks for the reply in regards to gerd and acid reflux im taking care of that they prescribed omeprazol and other medications such as dexilant...thank you

emilyp thank you for the reply and youre correct and thats what stuns me that the oral surgeon just took a look at it and said oh its not cancer it doesnt look like it is just as other 4 Ent had done so previously ive been having it since i last noticed it for about 6 months now and it still there what bothers me is the ear pain and throat pain that happen ever so often i mentioned these symptoms to them and said it could be caused by some other condition such as acid reflux but i dont understand why its unilateral to the side where the lump is...I cant sleep at night thinking I have cancer and cant get a proper diagnosis and ive been trying to find out what this is since i first noticed the lump hence the earlier you catch it the better but with these doctors im pretty much frustrated....

Thanks for the reply it's much appreciated

Hi, Just wanted you to know I had every oral cancer symptom in the book much like yours but w/out a specific lump...felt like a piece of glass lodged in my throat....saw 13 doctors...in the hospital 2x due to pain...2 teeth removed, and countless tests. Not Cancer, but what it is??? 13 doctors and no one knows. Over the span of 4 months, the symptoms are very slowly going away. No diagnosis and frustration doesn't begin to describe my life. I've just decided that I don't have oral cancer and have to live with the remaining neck/ear/throat pain, until it mysteriously goes away OR blows up into something recognizable to lackadaisical doctors. I feel for you, and hope you can close that door for the time being. You don't want to lose all that time worrying, perhaps for nothing. Good luck!

2nd time thanks for the reply
Yeah its very frustrating all the specialists ive seen tell me that it is not cancer and that im overthinking the situation and stressing myself out but theyre not experiencing the pain, it does not affect them directly...the fact that they look at the lump and i mention having it for over five months coupled with all the symptoms ear pain throat pain tooth sensibility chest pain etc. and they just say its acid reflux that it is not cancer concerns me... The last ENT i saw at the hospital i took him cat scans of my throat i sat there spoke to him for half an hour explained everything i told him that i just wanted to rule out the possibility of this being cancer. He then proceeded to feel it with his fingers looked at the back of my throat performed a laryngoscopy and said that he was absolutely certain it is not oral cancer that i had to relax i was killing myself with all the stress and frustration i asked why the symptoms and again he said it was acid reflux and that my throat box was completely irritated...He said that i had to live my life and stop worrying soo much that he almost felt as if the only way i would relax was if i was told i had cancer which i found absolutely absurd...he also mentioned that he sees approximately 10 to 15 patients with oral cancer on a daily basis and what i had looked nothing similar to the other cases.....
Thus the title of my thread dont know what to do anymore im frustrated.....
Thanks you offer some relief to my anxiety and iam forever greatful for it.....

Does the lesion itself cause pain? Both times I was diagnosed it was a difficult process and the only thing that finally confirmed a diagnosis was an excisional biopsy of the lump. In both cases, the lump itself was BIZARRELY PAINFUL and in my opinion could not be ignored any longer. My advice is "follow the pain", but if the lump/lesion itself is not painful and you are experiencing symptoms that come and go, perhaps it is something else. Follow the pain. Good luck.

Donna

Dez,

I can't speak for everyone, but my experience with ENT's, and my dentist was that they took a look at (without blood tests, biopsy, or any other diagnostic tool), and knew it was cancer. The only one who missed it was GP, so if that many ENT's are looking at it and telling you it's not cancer, you need to dance a jig. The rest of us were not so lucky.

I realize this doesn't address your pain issues, and a lack of diagnosis of what the problem is really, is frustrating, but if I were you I would simply be counting my lucky stars that it is not cancer.

Pandora99 thanks for the reply
the lump itself or lesion does not cause any pain, at times however i get a burning sensation...aside from that it just sits there...I had an excisional biopsy done but i felt as if the ENT did not perform it correctly hence the lump is still there she removed tissue around the edges and nearby but did not remove the actual lump and thats my concern and frustration...The ear pain and chest pain comes and goes i could be fine for like three days and then it will begin to hurt and the process repeats itself...and lately its been getting worst but all the 6 ENT's ive seen say its acid reflux....

thanks again
feli

Tina thank you for the reply i appreciate it
I understand what you mean it is just extremely frustrating due to the fact that I experience the ear pain chest pain throat pain all the signs indicative of oral cancer and the pain is unilateral to the side of the lesion/lump and despite all of this they insist and assure me that it is not cancer with great certainty some just by looking at it...and so i say to them what is it?

but then again the acid reflux medication they prescribe does nothing to ease my pain nor does it get rid of the lump which ive had for over five months since i noticed it...the most weird symptom i have is this crack in my neck like a snap of some sort when i cringe i can hear it it's weird......

everytime i visit a specialist and im told that it is not cancer i get a sense of hope and comfort yet once i begin to feel the pain and symptoms the frustration and constant what ifs? resurface causing great stress and uncertainty in my life i just dislike that soo much time has passed and it doesnt seem to get any better and without an accurate diagnosis i cant do much and visiting these specialists is costly at times i feel as if im wasting my time and money searching for an answer they cant find themselves. I just pray it is not cancer.

thank you
Tina