Hello, my name is Marci. I am 43 years old and yes I do smoke.

On January 7, during a routine dental cleaning my dentist found, what she called a lesion on left side of my tongue way in the back. She wrote me a referral to see an oral surgeon to evaluate and biopsy if necessary.

When I got home I took a look at the lesion and then all through the mouth. In my opinion this is more of a lump or growth than lesion. It is not ulcerated or discolored. It is in the region where the lingual tonsils are located. It is about the size of a pea. I then also noticed another possible suspicious spot underneath on the left side of the tongue. This one looks like a skin tag.

I found the OCF site as I was looking for pictures of suspicious spots in the mouth. I have read most everything on the site as well as lots and lots of posts under the introduce yourself section, looking for something similar. I am grateful to have found this site and I am in awe of all of you here.

I saw the oral surgeon the following week. He looked at it and stated that it looked to be on the lingual tonsil and could just be swelling of lingual tonsil tissue. Said that it didn�t look angry but that he has biopsied some that looked angry and weren�t cancer and that he has biopsied some that didn�t look angry and it was cancer. Because it is on the lingual tonsil he wanted to wait a week to see if it goes down. He led me to believe that he would biopsy it because he asked if I wanted to stay awake or go to sleep. We agreed to go to sleep because of the location. He stated that it would make his job easier.

I saw the oral surgeon again the next week with the lump still looking the same he said he wanted me to see an ENT because it might save me a surgery.

Two weeks later I saw an ENT. He looked at both spots on my tongue and said he didn�t think they are concerning. He stated the smaller one looked like a skin tag as I thought. He made it clear that he was not giving a 100% answer that it is nothing, but he doesn�t think they are concerning. He stated that he will biopsy them if I want him to and he was willing to do it right then and I waffled. He also stated that it could be a clogged mucous gland?

My reason for waffling is that this is so far back on my tongue I gag when it is touched. I am afraid that I will start gagging during the biopsy. We talked about options to that and he said that he would first attempt it in office no matter what and that only if I could not tolerate it we would do it in another setting.

Most of my immediate family is completely relieved by the ENT stating they are not concerning. My husband still feels that the biopsy is the right course because he wants a definite answer. Because everyone is so relieved at what the doctor said, I also feel like getting the biopsy done is taking it too far.

So here I am looking to all you wonderful people for some information and thoughts on what to do.

Additional information:

Ringing in my left ear for 10 months. ENT is setting up hearing test regarding this. Occasionally I get pressure in the ears with dizziness and nausea with the ear ringing.

Intermittent sore throats that is strange in nature to me. It doesn�t feel as if they are on the surface of my throat, but more inside. When this happens, I can feel the soreness when touching the outside of my throat on the neck. These will last anywhere from 2 hours to 2 days. Happening for about 6 months now.

Intermittent ear pain. Mainly in the right ear. This pain has woken me up in the night as well. ENT says ears look clear. Happening for about 6 months now.

Intermittent Pain under my jaw on the left side. Happening for 2 years. I had a bad infection that landed me in the hosipital for 5 days. It wouldn't respond to oral antibiotics. They did tell me that it was not MRSA in nature but could not figure out what/why it happened. I saw doctors for 7 months following the infection. Drs included medical, Oral surgeon and endodontist.

Thank you,
Marci

Marci,

You would not be here if you weren't concerned that your doctors have been somewhat dismissive.

Knowing what I know now after being on these boards for 3.5 years, I would encourage you to have the biopsy..perhaps with twilight sedation (you need to insist) to know for sure what you are dealing with.

Even better, schedule a consultation with the Head and Neck Department of a Comprehensive Cancer Center in your area since they see this stuff every day and can probably definitively rule cancer in or out and be able to look for other areas of concern in your oral cavity. Here is a list of CCC''s:

http://www.oralcancerfoundation.org/resources/cancer_centers.htm

I agree with Deb. You will rest easier if you have it biopsied.

Marci,

I had a peristant ulcer on the lateral part of my tongue so it's a different location than what you are describing. But, I had two different ENT's tell me not to worry about it. My dentist sent me for a third opinion as he was not satisfied...I went for a third opinion and had a biopsy that revealed a problem....that being said, I would biospy. I would definitely biopsy. Again, I had two different ENT's tell me not to worry.

Hi Marci, Welcome, I would really get a biopsy. Better safe than sorry. I think with cancer the earlier its caught the better the outcome.

Get the bio. You really have nothing to loose and so much more to gain.

If you have had a sore in your mouth for over 2 weeks and it has not improved then you should have it biopsied. A biopsy is not a big deal. Ive had them done by being put to sleep, with a local numbing and without any numbing at all. It is a quick snip and its done. If I ever have to have another one done, I would do it awake without the numbing shot. To me the shot was worse than the biopsy.

Get the biopsy done, its the only way to tell for sure if its cancer. Oh yeah, hope you are able to use this as a wake up call and quit smoking.

Marci

I am the number one proponent here on OCF about avoiding any surgery if not "absolutely necessary". I'm in the minority here on neck dissections and feeding tubes. Yet I have to tell you to get that biopsy. It is the one and only way to know if it is cancer. So IMO, it's absolutely necessary.
If it's cancer and you don't catch it now, you will never forgive yourself. Many many of us were misdiagnosed originally, hey read the papers about movie stars being told not to worry, until they finally had a biopsy. Plus if the biopsy is negative, they you can quit worrying
Best wishes
charm

Thank you all so much for your replies and advice. I will schedule the biopsy. My main fear is gagging while he is in there. Front part of my tongue would be no problem. Which brings me to one more question. Should I have him biopsy both spots? The small skin tag looking spot is front of the tongue underneath. I will ensure that I post back on the results.

Again, I want to thank you all. Special thanks to David, Christine and Charm. I have read many many of your posts and about your journey with this. You are truely amazing and wonderful.

Christine - I know, I know, I know! I am really struggling with quitting.

Thanks,
Marci

Hi Marci,

It seems the people who have already posted convinced you to get a biopsy but I can't not reply.

GET A BIOPSY. Don't worry about gagging...they can put you to sleep and you will be none the wiser. I was 27 when I was diagnosed. Like Yvonne, I had what I thought was an ulcer. We tried night guards etc and finally had it biopsied and it was cancer. Please, please, please DO NOT ignore this. Like David said, you have everything to gain and nothing to lose. I hope they are right and it's nothing. But...a biopsy is the only way to tell for sure. Please let us know how you make out.

Like Suzanne, I feel that I have add my 2 cents here.

I think that both of your doctors have done you a diservice by not strongly recommending a biopsy. As a result of this, I would also recommend that you go to a CCC and have the biopsy done. The possibility of having OC is not something you want to avoid checking out because you are concerned about gagging.

What appears to be a tissue tag, probably is a tissue tag. The area you are describing is a common place for tissue tags. However getting it looked at again, will certainly be worth it.

Me too - I would go for the biopsy- better to be safe than sorry. I had a negative biopsy 2 years ago with no follow up even though the problem wasnt solved, my second biopsy 2 years later was cancerous. An my lesion wasn't ulcerated just sore off an on - and firm. Have it checked out it won't hurt you if it comes back negative, but could hurt you if it's positive and you don't catch it asap... Good luck!

Thank you again to the posters after my last thank you. I agree and feel that my doctors have been somewhat dismissive. I, unfortunately, am all to familiar with the doctors being dismissive.

What I am about to say maybe a little off topic and I apoligize if you find that to be the case.

My mother passed in 1981 when I was 13 (she was 35) of official dx lung cancer. She had been seeing doctors for six months because she was ill. I do not know her specific complaints, but I know at one point she was told she had severe gasteritis (sp). Anyhow she was dx'd after seeing my grandmothers dr. Grandma was bing treated for milgnant melonoma. This doc found 3 lumps in her (moms) neck and had them biopsied. At that point it was found that she had cancer in all organs and was untreatable. She passed 3 months later. BTW Grandma survied and lived to 94.

I mentioned in my first post that two years ago I was hospitaized with an infection in my mouth. The infection started after I had deep root cleaning of the teeth on the left side of my mouth. When the infection started I went strait away to my dentist and started antibiotics. after three days of antibiotics the node in my chin was the size of a ping pong ball and my mouth was extremly swollon. In the hospital They only told me that it was a cellulitis infection and kept asking me how I got it. I have had intermittent pain in my lower jaw on the left side ever since. The pain had started before the deep root cleaning and was one of the reasons it was done. The pain is becoming more frequent and more intense. After being released from the hospital I was asked to follow up with my gp. When I did, I had told him I was still in much pain and there was still a little swelling. He put me back on oral antibiotics. I saw him agian two weeks later swelling down but still in pain and that is when he said nothing more he could do for me medically and suggested I see the oral surgeon. Oral sugeon saw nothing in xrays concerning and sent me to endodontist to have teeth tested. Stated that there may be a tooth that needs a root canel that is not showing up on the xray. I saw the endodontist who tested my teeth every month for 3 months not finding anything. I still also have a little numbness in my chin on the left side. Endontist said it is from nerve damage from the infection.

With all this as well as well as some other past situations with drs I still walk into there offices with a feeling of what they say is gospel. I so many times loose all thoughts of what I was going to say before I got there. I forget symptoms and expeiances I wanted to tell them about.

I have the boipsy scheduled for Feb 24. The ENT e-mailed me and said he would walk me through every step of the way. I am comforted by that.

Thanks again. Oh and I will ensure that I let you know the results even if it is nothing. It seems that I read several posts where individuals didnt come back when results were negative for cancer.

Marci

Thanks Marci for the update.

If need be, write down your questions on a note card to take with you and even better, take someone to help hear what the docs are saying because two sets of ears make a difference when you are under stress.

And...advocate for yourself with regard to sedation. If you are afraid of choking then see if they can give you something more than a local (twilight sedation) to help get you thru it.

Interesting about your mother. It does sounds as though she might have had OC with mets. I am sure, at 13, that that was a terrible time for you.

Hugs, Deb

You've had quite the time Marci - definitely not an easy road and our hearts go out to you on the loss of your mom as such a young age.

With regard to thinking that what doctors are saying is gospel and not wanting to be labeled the "difficult patient" (anyone remember the Seinfeld episode where Elaine was identified on her chart as DIFFICULT?). I too suffer, I think from not being AS DIRECT as I would like to be with my doctors. I have gotten much better but initially I felt I might be insulting them if I questioned their plans. LET THOSE THOUGHTS GO. That isn't true and in fact doctors do like when patients ask the questions and express their fears clearly. That way, they can treat appropriately. TELL THEM how you feel. You will be shocked and very pleased at how receptive they are.

Make a list of all your questions. There are no DUMB questions. Take someone with you so that you can both discuss the answers afterwards.

This isn't a time for shyness. You are your advocate!

Hugs

Donna

Hi Marci,

i would get the ENT to biopsy both site, you might as well do it in one go. I had two suspicious lumps on my tongue and i got them both biopsied-they both came back positive. In a way finding out was a relief because the not knowing and wondering was what made me anxious.

Minh

Hi Marci,

Glad you have an appt with an ENT who seems to care about you and not putting things off. I have to say I know what it's like to get the run around. I went through the dentist, periodontist, endodontist, back to the dentist for deep cleaning. They were sending me back to the periodontist for a deeper cleaning before I finally called and got an appt with the dental oral surgeon. The surgeon did a biopsy and it came back positive. I hope that all goes well with this next doctors appt and you feel more comfortable with him. I will be praying that it is negative.

And do not be afraid to ask all the questions you need. I called into the office and it turns out my doctor said I was one of his favorites. It's also very ok to be picky about your doctors. If you don't feel comfortable or are getting the info you need go see someone else and it's ok to push to get an early appt.

Hi Marci,

I'm so happy to hear you are going for the biopsy...that makes me feel better, I've been thinking about you.

Here is a quick story about not questioning your doctor. My husband and I have gotten good at figuring how if a spot on my tongue is something to worry about over the years. There was a spot that we were concerned about, mainly because of how it felt to me. I insisted to my doc that I wanted it biopsied. She didn't feel it was warranted and wasn't going to do it. I told her it had to be done and would not take no for an answer. It was a good thing I did b/c it came back as severe dysplasia and she ended up doing my 4th partial glossectomy. When she saw the pathology she said she was happy we did it. (ok..so this wasn't a short story but worth it none the less)

Nobody wants to "that patient" (Donna I love Seinfeld and know that episode) but you have to be. Nobody cares about your health as much as you do and you MUST follow your instincts.

Thank you for letting us know your results either way. I hope everything is fine and you won't have to be posting here too long:)

You won't gag from getting a biopsy. I thought I would too but this must be mind over matter. I have had many and have yet to gag from a biopsy. Other things still make me gag as they did before. Usually this is something lite and more feathery than a Biopsy.

If I had not had my biopsy I would have more of my tongue, but then, I may not be sitting cancer free at this moment. To know for sure is much better than sitting there wondering...

The gagging issue: find out. You will not know until you try it and if the first way does not work for you there is still another option.

Very true - best to know - when your life is at stake - denial is not the path to take!

Hello,

Here are the results of biopsy. Thank you all again for your advice and support!

LEFT POSTERIOR TONGUE BIOPSY:
- BENIGN SQUAMOUS MUCOSA WITH UNDERLYING REACTIVE LYMPHOID
HYPERPLASIA CONSISTENT WITH LINGUAL TONSIL


Marci

We like the word "benign". I would have to pull out my medical dictionary for the rest of it.

By the way, most biopsies are done with a numbing spray. This will mask the gag reflex.

Thank you. I have looked up the rest on the net as I wanted to know what it means. I found defination of Hyperplasia on OCF:

HYPERPLASIA
A proliferation of cells which is not NEOPLASTIC. In some cases, this may be a result of the body's normal reaction to an imbalance or other stimulus, while in other cases the physiologic cause of the proliferation is not apparent. An example of the former process is the enlargement of lymph nodes in the neck as a result of reaction to a bacterial throat infection. The lymphocytes which make up the node divide and proliferate, taking up more volume in the node and causing it to expand. An example of hyperplasia in which the stimulus is not known is benign prostatic hyperplasia (BPH), in which the prostate gland enlarges in older men for no known reason. While hyperplasia's do not invade other organs or METASTASIZE to other parts of the body, they can still cause problems because of their local physical expansion. For instance, in BPH, the enlarged prostate pinches off the urethra and interferes with the flow of urine. If untreated, permanent kidney damage can result.

As far as REACTIVE... Not sure.

At this point I think all is okay. I will soon schedule an appointment with my GP to talk about the other things I have going on... intermitten sore throats and ear pain etc. Through this I also noted that my palantine tonsils are not the same size, (right is twice size of left)but none of the doctors I saw noted this to be a problem. I was diagnosed 11 years ago with CFIDS (chronic fatigue immune dysfunction syndrome) and was EBV active. It took a year and half to remission and I am wondering if I am becoming symptomattic again. UGH.

The numbing spray was amazing. Yes it calmed the gag reflex as well as I did not even feel the needle one little bit.

I am so glad that I found this site during this period. This is just a truly amazing foundation and forum. The people here are who have made it that way. I do plan to visit back occasionlly. I have been keeping up on the HPV developments because of the location of the lump.

I wish everyone here all the best and thank you for helping me.

Marci

Great news Marci:) Thank you for sharing your good news with us

Hello -- popping in with an update. Its been over a year since I have been here. Today I was diagnosed with a 12 mm mass in the posterior pituitary gland. I wanted to post an update here because one of the things I have learned is that these masses can cause high levels of growth hormone which in adults can cause tongue enlargement and tongue growths.

Again -- thank you so much for your support last year. I am so happy today to have a diagnoses for symptoms -- some of which I talked about here.

Wishing you all the very best.

Marci