I have been really worried and stressed for over a month , I have been having a white coated tongue for 6 weeks its completely white I have a small swollen lymph node in my neck for 4 weeks now (not painful) and slight ear pain in my left ear for 2 weeks...I've been treated for oral thrush twice and no response.I'm worried because symptoms seem to getting worse and not better...I've seen several doctors 8 total ,one doctor said thrush, second said smokers tongue, third said thursh , fourth said viral infection,fifth said its nothing,ent doctor said on first visit its normal and a lot of people get it, dentist said its from smoking...but what about my other symptoms they can't explain ...I'm really uneasy about all these different reasons and my regular doctor did tons of blood work so its not an infection...my ent won't do biopsy on white tongue ...I made an appointment at another Ent but am I going in the right direction?? What else could be wrong and would I have swelling and ear pain???I tried calling cancer center in philly and nyc Sloans Kettering and Ccc but they won't see me until I have been disgnosed..I need some help...please be nice with replies???

Have you tried mixing some baking soda with water, don't know what the proportion is, I just know by now, you don't need lots. Try 1/2 tsp in 4-6 oz water. Swish it around in your mouth, if you can get a piece of gauze, dip it in the mix and wash your tongue off, see if you can get the regular look of your tongue back, even temporarily.
Could be bacteria. Don't know about your lymph node, how long?

Number one thing though if you are concerned about oral cancer, or any cancer really, is to stop smoking. There's help out there, find a way. It'll hurt your nerves at first, but go a long way to giving you more peace of mind later on.

Best,
Anne

It's my medical opinion that it's smokers tongue as you smoke, you probably drink alcohol (studies show the majority of people that smoke cigarrettes also drink) and like the general population walk around dehydrated and breath through your mouth(all causes of white tonge per the Mayo Clinic, link below). Now I'm not a Dr, but I've played one in my 9th grade drama class and my IQ score on the Stanford-Binet is 15 points higher then the average surgeons so that's got to count for something right?

You're symptoms also match up with HIV (swollen lymph node, white tongue as mentioned in the link below) again, my medical opinion.

Important advice included in the links below and also my sound medical advice...see a Dr, who'll refer you to an ENT...I remember giving this same advice earlier but I've had chemo and radiation to the head so I never quite remember

http://menshealth.about.com/od/conditions/a/HIV_signs.htm

http://www.mayoclinic.com/health/white-tongue/MY01011

Eric

Wow you assume HIV??that's alittle harsh...FYI for u I've been tested for that the reason I'm not concerned with that...I've read all of the possible causes several times and none add up with my symptoms and the amount of time I've had them..please be alittle patient with me..I'm sure you know doctors aren't always right espeically when they are just looking at you and not running test...do you believe my symptoms are all mad up???I can upload pics of my tongue and I know how I feel which I've never before...I was reffered to this site by a friend and she said I would find help and answers here but you've been very mean to me..sorry if I've been a bother to anyone

Okay do me a favor - go to the health food store (whole foods) buy a jar of pure manuka honey 16+ - after each meal - take a small teaspoon full - put it in your mouth - let it melt - hold it there - swish it around for about a minute to two - do this for a few days! (you can swallow it) The manuka is not cheap can run up to about 20 dollars - it is all natural and natures version of hydrogen peroxide - it is anti- inflammatory, anti fungal, and cleans remarkably well - I had a few white Patches on my tongue post treatment I asked my dr for anti thrush meds - he said I had it in my magic mouth wash which I was using ( and wasn't helping ) two days with the honey cleared it up - since yours seems more involved it may take a but longer but try it - while you are busy trying to get a second opinion. Good luck -

Trese, I looked at your posts and I don't think anyone has been mean to you. The people here have gone through some of the worst hell that anyone can go through. They are the most supportive people you would ever encounter. Once you get that second opinion from an ENT, and if he/she tells you that it is not oral cancer, rejoice! The folks here are trying to reassure you. Good luck, and hopefully the next ENT will rest your mind.

Trese,

I think the odds of you having HIV is about the same as you having oral cancer.

You know what we tell people everyday on these forums? If you have something in your mouth that concerns you get it checked by an ENT. If you don't like what they tell you, get a second opinion. If you have any specific symptoms that were oral cancer related (lymph nodes, white patches on tongue etc..) the advice would be....wait for it...get checked by an ENT and if you don't like their opinion get a second opinion.

We also say on these forums that it's NOT oral cancer until a biopsy says it is, no matter what a CT/PET scan or MRI says, no matter what who your Dr is. You've been to 8 Dr's and an ENT, who say it's nothing, you want a biopsy to ease your mind (which I doubt will) so get one from your second ENT, they are still going to need an area they are concerned about to biopsy that presents like cancer.

Even if you uploaded pictures nobody here is Dr. House M.D. or Sherlocke Holmes, Perry Mason or even Nancy Drew (my favorite) we can't help you anymore until AFTER YOU KNOW IT'S CANCER. When you know it's cancer we can use our vast experience to help you cope...but we're not Dr's.

Now if you ever get to know me, you'll understand that it's not just you I enjoy mocking, I mock everyone equally...even myself.

In all seriousness, stop already, put it out of your mind and get the second opinion, if an ENT can't answer your questions or ease your mind there's nobody here that will be able to either.

That would be reason talking...just in case you missed it...

Hi Trese,

Manuka honey really is a great thing to try. It works on all sorts of things. Maybe that will get your tongue to return to a normal color. My tongue gets a bit of a white-ish cast when I'm dehydrated. Very few of us drink enough water. Might be worth a try.

I'm worried about your ear pain you mentioned in your other post and the swollen lymph node. Cancer doesn't always show up on the surface. Many times it is deep inside the tonsils, or other tissues and structures.

Here's the process we went through.

My ex-husband's only symptom was a swollen lymph node. His general practitioner ordered an ultrasound which told her it looked cystic. The next thing she did was ordered a fine needle aspiration biopsy (FNA). The FNA was negative. He was referred to an ENT. He prescribed antibiotics which caused a big downward spiral in his health--but was NOT indicative that he had cancer. He had an MRI at the end of the month he was sick. When he recovered, the ENT did a biopsy of the lymph node. Then he had a PET scan. Had he not been misdiagnosed with having cancer, it would have ended there.

When you are scared and worried, it occupies your thoughts every waking minute. I wish I could say something that would ease your mind. The only thing I can recommend is to get in to see the best ENT to whom you have access. And, if you get a cancer diagnosis, then seek a second opinion from a CCC.

However, if you get an opinion that says you are cancer-free...rejoice! Virtually every single person on this forum who has been diagnosed with cancer or cares for a patient would have loved to hear the words, "negative for cancer."...myself included. It rips your life apart. You have no alternative but to learn how to deal with a "new normal." I can't tell you the depth of my hatred for those words. The "new normal" involves a life-time of side-effects...if you are lucky.

You can bring an illness onto yourself by worrying too much. And, you can waste precious time that can be spent living and being happy. A misdiagnosis cost me nearly a year of worrying. A diagnosis costs people a life-time of it--worrying if the next scan will be positive, worrying that it will come back, etc. Sometimes the best gift we can give ourselves is the strength to quiet our fears and not give in to worry. At some point, you will need to trust what a doctor tells you. With good reason, I know very well how difficult it is to trust what a doctor says. But, at some point I had to trust.

From my experience with OC, I learned to escape the fear and worry by going to my "happy place". It really helped me and got me through 5 months of waiting for a final diagnosis. At that point it would have only gone one of two ways...cancer-free or terminal. I spent a lot of time in my "happy place"! It can help you escape a little until you get to see the next doctor.

Sending special thoughts out to you for peace, health, and great happiness.

Sandy
xoxox

I agree sandy - he really needs to get a good second opinion, the tongue to me was inconsequential but the lymph nodes and ear pain are worrisome! good luck.

Trese, ear pain is one of the early symptoms and I remember my dad mentioning it both times. He also mentioned that Pinna (the visible part of the ear) would also have tingling sensation and sometimes would go numb.

Only biopsy could confirm a cancer and if you feel that the lymph node is unusually swollen, you should have a node biopsy (Guided FNAC or excisional). If tongue is asymptomatic as per several ENT and you do have a cancer, lymph node biopsy would help confirming it.

All the best for your diagnosis.

Ok so how do I go about getting the biopsy of the node done, every doctor I got to says its probably due to a viral infection and it shall pass... eshwar were there any other symptoms for your dad?? I've to so many doctors I just feel like giving up..I have this pain that's coming and going like a pin and its also in the head but its a bad pain

Btw. I'm a female 28 smokers for one year quit two weeks ago and still have sypmtoms

Not sure this will be helpful to you but I had ear pain and an enlarged cancerous lymph node from an oral lesion on my tongue. The ear pain, however, was determined to be TMJ, from me clenching my jaw so many times from the stress. You can have ear pain, and it be related to oral cancer, depending on the location of the primary lesion. It was not only me that can to the conclusion about the TMJ (temporolmandibular joint)causing the pain. The dental oral cancer specialist at MD Anderson helped isolate it for me. Once I realized that it was a result of stress, I was able to relax my jaw enough that the pain left me before I had surgery to remove the cancer.

On the other hand I assume your lymph node is not very large; mine wasn't either and it was metastatic cancer. You'll have to find an ENT to do arrange an ultrasound and fine needle aspiration. Sounds like the ones you have availed yourself of are not convinced it is likely. You may have said, but how long have you had the swollen lymph node? Where exactly is it located? Those answers will figure into what an ENT thinks about it. I guess you'll have to either make an appointment to see an ENT you've already seen, and ask about the possibility of having a FNA, which is a biopsy of the fluid inside or find another ENT who will. Perhaps you can call first and talk to the PA or nurse about it.
Anne

Anne o

Thanks so much for the great information, I was just about to post here again....but to answer u I have had this swollen lymph node for around 3 weeks now the white tongue alittle over 6 weeks closer to 7weeks...the pain in ear just started this Wednesday and I've started antibiotics this Thursday because my regular doctor doesn't know what's wrong but he believes the antibiotics will help reduce the pain... I noticed today I got a white patch in roof of mouth( maybe from antibiotics??)
I've been been told I have TMJ a year ago but never had ear pain I also have bad gum diease for over 2 years now..all of this and I'm only 28...
Right now I'm in so much pain when I move my head I don't know what else to do..this is honestly the worse I've felt since all my symptoms begun...

I forgot to mention the lymph node is in my neck on the left side in the lower part of the neck near the muscule..

Trese,

I've been reading your posts. If I were in your shoes and felt something was wrong and no help from the Dr.'s. I would call the nearest Cancer Center and talk to someone there. It wouldn't hurt to talk to them on the phone and maybe they can lead you in the right direction. That would be my plan, first thing tomorrow morning.

Take care,
Connie

Get a needle biopsy done on the lymph node!

Hi Trese! Please relax. I know you are upset and afraid that you have cancer. When that scary thought creeps into your mind, then the "what if's" can be pretty hard to shake. I am sorry you have lost your parents to cancer! It must have been a very difficult time for you. That is also what makes this even scarier for you. At this time, it has not been proven that oral cancer is hereditary.

To me it sounds like you have thrush. Plain yogurt will help with thrush. I would give it a try. Another idea is to go see your family doctor for a good physical. Maybe they could refer you to another ENT, dentist or even an oral surgeon. To me it sounds like you have some sort of infection causing the enlarged lymph node. I agree with Kelly, that a needle biopsy can be done with the lymph node. If you havent been on antibiotics, then that might be something that would clear up the white tongue. You are right, a white tongue is not normal but it can happen. Keep up the good work with not smoking! Thats a hard habit to break. You do not need those irritants making this even worse for you.

I have also sent you a PM (private message). Small world, we live in the same area!

Please do your best to calm down and relax. It isnt helping you at all to be upset about this. I know how silly it sounds to stay calm when you are afraid you have cancer. I have been where you are but unfortunately, I did have cancer. I sincerely hope you do not!!! Of course we are not doctors here and its over the internet where nobody could diagnose you. We are however, very experienced with oral cancer. We learned thru going thru it as patients and caregivers.

Best wishes with getting to the bottom of this!

Hi, Trese.
I work as a medical professional, but I am not a physician. It sounds to me that after seeing 8 different doctors, none of them have been on the same page. In other words, when you have that many practitioners working out of different facilities, the lack of communication can be a huge problem. This is YOUR body we're talking about. Nothing should be dismissed until it is further investigated. As others have said, the swollen lymph node and ear pain are the most concerning symptoms. Unfortunately, a diagnosis cannot be made without analyzing a tissue sample. I agree that a lymph node biopsy seems like a reasonable start, but again, I am not a doctor. As far as the tongue changes are concerned, I would think at least one of the doctors you have seen by now has cultured your tounge. If so, what were the results? I developed a white, hairy tongue after my partial glossectomy. It is common in those who are on soft/liquid diets for extended periods of time and the cells on the surface of the tongue proliferate due to lack of roughage, which normally kind of "exfoliates" the tongue. I never had it before and I have never been a smoker or a drinker. When I was in the hospital recovering from my surgery, the doctors thought I had a wound infection at my neck dissection site, so they had an infectious disease specialist come in to evaluate me. She asked to look inside my mouth and saw that I had a white tongue and immediately said that I had thrush. I replied, no it's not thrush, I just have been drinking vanilla ensure and it was hard to clear my secretions, so my tongue was white. So, my point is in MANY situations you cannot just "look" at something and make a diagnosis. To me that is not thorough and it's dismissive on the practitioner's part. It is extremely important that the doctor get a FULL, accurate history from you. Things that you may not consider relevant in your medical history may be key to the doctor. The history will help lead the doctor to the next reasonable step in the diagnostic process.

I would suggest the following steps to get yourself organized for a second opinion from an ENT. Of course, this can all be done in the days leading up the your appointment. Don't wait until you have all of the records before you make an appointment. Time is prescious when it comes to making an early diagnosis if it is oral cancer. You should not have to wait more than a week or two for a consultation. If you can't get in sooner, see if your PCP can call and influence them to squeeze you in sooner. If that doesn't work, go somewhere else.

Get ALL of your medical records from each practitioner that you saw. Tell them you want every test report, lab work, consultation notes, progress notes/follow up notes. Often if you ask for copies of your medical records, you will only get office notes. You have a legal right to all of the information as long as you sign a medical release form. You might need to give them a week or so to provide these materials and there may be a charge for them. It depends on the facility. They really shouldn't be charging you for your records if you are seeking another opinion. BTW, any practitioner that balks at your getting a second or third opinion should be red-flagged in your book. A good medical professional should enocourage and welcome the notion of you seeking another opinion.

Once you have all of your records, try to organize them as best you can both chronologically and by practitioner. Ask the office if they would like you to forward your records ahead of time so they can be reviewed. As always, be sure to keep copies for yourself.

Next and most importantly, get yourself a notebook and write down every single question and concern that you have. When you see the doctor, things tend to just fly right out of your head and you forget things that are important that you wanted to ask. I advise all of my patients to do this when visiting a doctor. Doctors are faced with the challenge of seeing patients every 5-10 minutes, so some are rushing out the door before you can get your questions in. If you go in armed with questions, the doctor is much less likely to leave until they have all been answered. Just tell the doctor up front that you have some questions/concerns written down and anything that doesn't come up during his interview/exam, you'd like to have a chance to ask after he/she is finished. My advice is to prioritize them in case you can't get through all of them in one visit, but in most cases, you should be able to get through them all or a nurse/resident/fellow can answer them for you as well.

I wish you the best of luck in this scary process. Of course, all of us here hope that it is nothing serious and that you can get an accurate diagnosis and effective, appropriate treatment. Please keep us posted and feel free to ask any and all questions you may have. We may not have all the answers, but all of us have been through so much and can share our experience, strength, and hope.

With care,
Kerri

Hi Trese,

My dad also had loss of appetite but it could be also due to his lesion on his tongue. Otherwise, he was pretty asymptomatic.

While you have had opinion from others, I am sharing my sister-in-law's experience who is old as you (does not smoke). She also had a swollen painful lymph-node 2 years back and she had several blood work and finally the doctor decided to go for FNAC (twice, Ultrasound guided second time), which also came out inconclusive. She also had pain while moving head. She had to go for an excisional biopsy and that came out negative (for cancer). The biopsy was a quick procedure and she did had a discomfort for few weeks but it gave her peace of mind. Doctor also identified the cause (rare disease in this part of world) and was able to treat her and she was back to normal in few weeks.

As with her, you may also come out clear.