Hi Everyone,

Thought I would introduce myself on here. I'll try not to come off as a hypochondriac but I'd be lying if it said I wasn't scared. Here's my story:

8 months ago I noticed a dime sized lump/papule on the right side of my tongue, almost right where the tongue and cheek meet at the base. I thought it was weird but didn't think anything of it. 3 months later, there were no changes but thought I should get it checked out by a doctor. She looked at it, noticed the back of my throat and tonsils were red and said she wouldn't be too concerned about it. She said most people my age (25) have larger tonsils. I asked if she was absolutely sure I shouldn't get this checked out by a specialist, I said it couldn't hurt right? She said no, just monitor it for now, if there are any changes please come back. I decided to just let it go, and waited another 3 months.

Last week, I went to a new dentist and had all kinds of questions and checkups done. They asked if I've ever had an oral cancer screening, and it hit my like a slap in the face. I said no, but I'd really be interested in having one done. The screening was done by using a device called a Velscope. If you're not sure what it is, it shines a blue light into your mouth. Healthy tissue would appear fluorescent, while unhealthy suspicion tissue would appear dark.

The first time the doctor looked at it, it was for like 10 seconds and it seemed pretty quick. So I asked can you check again and focus on the area that has the lump/papule? She checked and she seemed unsure about it like my last doctor. She also said it doesn't look bad, and on the Velscope it's fluorescent so it should be healthy tissue. She said if I am concerned about it though she can refer me to an Oral Maxillofacial Surgeon. I accepted, and I have my appointment tomorrow.

Like I said, I'm pretty scared. Every time doctors look at the back of my throat they don't know why it's so red, and they kind of brush it off after I say I don't feel sick or have allergies. Sometimes a get a dull pain in my throat, neck and ear.

I can't help but notice from other posts people are saying go see an ENT doctor, I'm not sure if things just work differently here in Canada (Ontario) but I'm seeing an Oral Maxillofacial Surgeon instead tomorrow where I will get a consultation and biopsy. I don't smoke at all, only tried it once in the past and hated it. I drink alcohol maybe once a month. I am sexually active though... I'm just trying to stay calm...

Does anyone have any advice? Anyone in Canada possibly? Well anyone's help would be really appreciated... help...

Welcome to OCF!

Only thru a biopsy will the medical professional be able to determine exactly what the lump is. A veliscope is a great tool at showing things the naked eye can not pick up. But they do not tell what it is, only that there is an abnormality.

The rule of thumb is "any sore you have in your mouth that does not go away by itself within 2 or 3 weeks should be checked by a medical professional". I suggest seeking out an ENT who mainly deals with oral cancer patients. Thats not to say I suspect thats what you have going on, I honestly dont know (its not possible to tell over the internet). It could be any number of issues that can easily get resolved.

Hopefully its nothing serious. Good luck!

Hi and welcome to OCF.

Queries like yours are common, and sometimes I feel like saying OMG thats a classic stage 5 uvulopalato cancer cluster! You're going to die by the weekend!!! Of course its no laughing matter, but if you google long enough thats what you'll find.

Oral surgeons are fancy dentists, ENTs treat cancers and the oral surgeon will probably just refer you to an ENT. The lump could be many things, most of them harmless. A biopsy is the definitive way if its cancer and what type it is. The positive side of oral cancers is it is relatively straightforward to do a biopsy with no more than a local.

Let us know how you go, and try to keep calm and stay off the internet. I'm fairly confident you'll survive the weekend

Welcome to OCF! You are doing the right thing to follow up and question what is happening in your mouth. If you are concerned then get an appointment with a ENT who can perform a biopsy. This will provide the true answer to your concerns.

Good luck,
Don

Thanks so much for the pointers everyone. I just wanted to update you on the situation.

So I saw the Oral Maxillofacial Surgeon and it was sort of helpful yet sort of useless. He examined my mouth with a flashlight several times, I talked to him about my concerns and he eventually told me I was worrying about nothing. He looked at me as if I was too concerned. He said the biopsy would consist of him removing the growth/papule entirely from my tongue and they would do the biopsy on what they've removed.

When I asked him to do a biopsy of maybe my tonsils or throat he said that's not his area of expertise. I asked if he would refer me to an ENT and he said he can't do that. He also said, and I quote "I promise you, you have nothing to worry about".

I guess that made me feel a little better but at the same time if its not his area of expertise how is he able to promise me that? With only looking at me with a flashing, no biopsy no x-ray, no PET.... I mean I could say there's going to be snowstorms tomorrow it doesn't make me a meteorologist! Needless to say I left his office a little pissed.

I immediately called my dentist and told them what happened. They apologized about it, but when I asked for a refferal to an ENT doctor they said they can't do that and I'll need to go to my family doctor to get the refferal. I have an appointment on Monday with my family doctor.

For any Americans reading this, yes free health care is nice but sometimes its not worth the amount of hoops you gotta jump through to get the right doctor/treatment. You can't just make an appointment with an ENT you have to be referred.

Currently my throats been hurting me but there are no visible changes to my mouth. The growth is the same, swollen red tonsils (one seems slightly bigger than the other). I swabbed my throat and the swab was slightly pink so it seems it is bleeding.

Should I allow the Oral Maxillofacial Surgeon to take off the growth and do the biopsy or wait to see what happens with my family doctor to see if I can get an ENT doctor? Any Canadians reading this?

How frustrating. Since you are seeing your family doctor on Monday, it seems that you can just wait for their referral at this point.

It certainly does seem that there are some tradeoffs with universal healthcare systems. In my case, my lesion was spotted by my dentist who referred me to the oral surgeon (same as you just saw). Since the lesion was only in the area of the tongue, he did a biopsy, but if it had been elsewhere, I could have actually even self-referred right to an ENT, as long as they were in my insurance network. Ultimately, when the biopsy came back positive, I was referred to an ENT, got in to see him 2 days later, and had surgery only 4 days after that. It all happened very fast once the DX was made.

Thanks KitKat1. Yeah it is very frustrating... This isn't the first time I've been in a situation like this with health care in this country.

Now after hearing what happened to you I feel like I should have just had the biopsy done. He said he would take off the whole lesion though which scared me. Ugh I feel so lost...

MrStressed88 - hard to say if that would have been the right thing or not. Your lesion is many times larger than mine, since mine was only 3 mm total - just a tiny little thing. Having an oral surgeon remove a dime-sized lesion in his office under a local sounds pretty scary to me!

[quote]You can't just make an appointment with an ENT you have to be referred.[/quote]The USA has two primary models: PPO and HMO. One allows subscribers to go to any provider they choose with out referral while the other requires your primary to make all specialist referrals. There is a network concept with both and in-network providers provider more coverage for less while out-of-network providers can offer whatever service you need but the cost to the subscriber is higher, often a lot higher.

Good luck

I have to say the referral process here in Canada is okay. It generally helps to do your homework before hand and find a specific name of a dr. you would like to be seen by. Most drs will refer within their group of peers, but that's not always the best option. Find out the name of a top ENT with a history of dealing with Oral cancer, and ask for a referral from your family dr. The have no grounds to deny you this request.

No onto our description of what you have.

HPV related oral cancer (tonsil related, or base of tongue (which is actually found down your throat) is often found in men and women over the age of 35) It is related to a certain strain of HPV 16 and I think the lesser known 18 (someone will correct me if I am wrong)

Tongue cancer - Oral tongue cancer - is traditionally NON HPV related - and can hit at any age though traditionally it has been found in older men who are heavy smokers and drinkers.

A combo tonsil/tongue cancer would be very RARE - the only instance that I would expect this would be if the cancer was such a size that it spread from - say the tonsil downward into the actual physical tongue (or vice versa) I'm thinking at that point with that much involvement it would be manifesting in your nodes as well and possibly causing other issues.

I guess I'm trying to say - Try not to worry. But also make sure you get an examination by a qualified ENT who specializes in Oral cancer - that way you know - if he says you're clear - that its likely very true. HUGS.

Hello everyone,

Sorry for my absence, but I just wanted to come back when I had more news of the situation rather than just spilling all my worries on here without any real updates. After reading many messageboard posts like mine, its irritating when the original poster disappears and never gives an update or conclusion on their situation. I vow not to be that person.

After seeing my family doctor he said he couldn't even see the lesion (I don't know how that even happened?), and everything appeared normal to him. When I pushed for it he said he can refer me to an ENT Specialist for a 2nd opinion, I said yes and had an appointment scheduled.

Yesterday I saw the ENT specialist and though he was a little rude, and kind of seemed to brush off my concerns, he did examine my throat by inserting this camera through a tube, up my nose and down my throat. He said everything in regards to my throat looks normal. He also examined the growth on the side of my tongue and he said it looks like a wart, but he wouldn't be too concerned about it. He offered to remove it and run a biopsy on it but I refused because I had an appointment the next day to get it removed and biopsied by the Maxillofacial surgeon the next day.

Today was that appointment, I had the surgery and they removed it. Test results will come back in 3 weeks... 3 stressful weeks. Now I just have to wait. I've been telling myself that if 5 doctors have said they're "not concerned about it" (Sexual health doctor from the first post, Dentist, Family Doctor, ENT, and Maxillofacial Surgeon) then I should be okay if the results come back as normal.

I'm just wondering, what do you all think? Should I get a 2nd opinion from another ENT? Only thing is now the main lesion that sparked all this is gone now. Let me know, much appreciated...

You are probably ok but the only way to be sure is from the biopsy results. Probably just best to wait and try and relax. "The wait is the hardest part.." All the best.

Wait see what the results say. Chances are it was nothing but the biopsy would be definitive. Do keep an eye on the area after to make sure it heals etc... I am surprised the one dr. didn't see it when the other dr obviously did in order to remove it. Rude tends to be the case with some specialists - often they are brisk and busy and do seem to have that blow off air. As long as you are clear on what you want to have done and what your concern is, then they will usually follow through on the request ( its more of a save your hide situation - if he or she doesn't and it turns out it was cancer - it could mean trouble for them ) My dr. initially was nice but distant, he's warmed up over time I think too that since all he does is oral cancer and surgery that he sees a lot of scary/sad/bad news stories. Maybe this is his way of dealing with the ins and outs of it. And he has every right to be a snob as he is the best of the best.. I told myself I don't need a shoulder to cry on - or a hand holder, I need a guy who is damn good at what he does. ;o) Anyway... wait... it's not fun, but start calling at week two. Usually its not more than 14 days.
fingers crossed for you.

Results are usually ready in a few days, not weeks. Call and push to get a copy as soon as it is ready. But Canada might have different policies on when and how results are communicated.

Here it tends to run around 2 weeks.

Thanks so much everyone. I'm hoping its nothing too. I will call back in 2 weeks to see what I could do. I know they don't provide biopsy results just like that over the phone though, whether good or bad...

This is really for down the road. If you are still uncertain about the results, you can ask your family doctor to refer you to a specific doctor at the Head and Neck Clinic at Princess Margaret Hospital in Toronto for a second opinion. The husband of a friend of mine was suspected of having nasopharyngeal cancer. They weren't happy with their ENT who seemed more interested in selling them a CPAP machine (!), so they went back and asked their family doctor for a referral to the Head and Neck Clinic at PMH. It took about six weeks but they did get in. It does seem that you need to know which doctor you want to see. Have a look at the website of PMH if you ever want to do this.

That, is actually very helpful gmcraft, thank you so much! I think I will do just that...

Dr. Jonathan Irish is tops in his field at PMH... Hugs

Thanks Cheryl! I'll look into that as well.

I gotta say this is going to be a long 3 weeks. No matter what I try to do to distract myself it's always at the back of my mind...

I was reading on a website that the amount of sexual partners you have increases your chances of getting HPV16. Males more likely than females. I've had about 8 sexual partners, 8! Oral sex was rarely ever safe... only penetrative was... I guess I was fooling myself into thinking I was being safe with penetrative sex and thats all that mattered.

There was always very little resources regarding HPV and oral cancer connection when I first became sexually active. It was all about cervical cancer. Only recently this is coming to light.

Ugh 3 damn weeks... 3 damn weeks...

Hello, three weeks sounds long to wait for a biopsy, here in New Brunswick, Canada it takes a week to just a bit over a week and NB is one of the slower provinces. My husband had to get a biopsy after his surgery and prior to his radiation to insure he did not have a reacurance and it took one week. The pathology report after the surgery took almost a month, usually it takes three weeks. (In this case they are studying the entire surgical resection slice by slice)

Know that you are doing everything you can, Sophie

Thanks Sophie!

After reading your post I thought enough time had pass for at least a follow up call as it would be 2 weeks I've wait for the biopsy results this Wednesday.

They said the results are not in yet. I did express my concern and worries to the receptionist. The receptionist just said, to be honest if the lab found anything alarming with the biopsy they would have call almost immediately to let us know to make an appointment with the patient, so just try to relax and wait for your scheduled appointment. She also said she's just talking from her experience so don't take what she says as the end result but just try to relax for now.

So I guess this has calmed me down for now.

P.S - I also would like to apologize to you all for my last post. I guess that was too revealing to everyone and I was having a panic attack. I'd just like to be as transparent as possible to anyone who might be in the same situation as me.

Hey everyone. Results from the biopsy came back, it's just a cyst.
The official wording of the biopsy was this:

[quote]Gross Description: The specimen consisted of one piece of tan soft tissue, measuring 0.5x0.5.0.3cm. It was bisected and submitted in total for histology

Microscopic Description: Sections show oral mucosa composed of stratified squamous epithelium overly fibrous connective tissue. There is an invagination of surface epithelium into the underlying connective tissue that is partially lined by parakeratinized stratified squamous epithelium, containing some desquamated keratin and surrounded by a wall of lymphoid tissue with germinal centers.

Diagnosis: Tissue from right posterior tongue base: consistent with lymphoepithelial cyst.[/quote]

Sorry about saying "dime sized" in my initial post, guess it was smaller. Hope it's not a bad thing that I posted my full results but I just wanted my situation to be transparent as I said before.

So what's next for me? I'm just going to try to relax for now. I have a follow up appointment in 6 months with the Oral Maxillofacial Surgeon just to see if it grows back.

I also (basically begged) my doctor for a referral to see the best ENT specialist in my city to have a better look at my throat as I can see what appears to be bumps, or papillomas at the back of my throat. My family doctor said it's just cobblestoning of the throat and I shouldn't be worried, but I insisted on the referral. The line is long and I probably won't see this ENT until around May next year as my case is considered low priority with this diagnosis.

Thanks for all your help everyone. If this was stressful to me for the past month and a half I can't imagine what it was like for you all... you all are truly soldiers.

I'll still be poking around these forums every now and then. As always appreciated, let me know what you all think.

That's terrific - see now you know!

Thanks Cheryl!

I just wish the Greater Toronto Area had some sort of screening to test for pre-malignant/dysplasia in oral tissue.

You need to find a top notch ENT to keep an eye on you.

I second Cheryl, when you have had oral growths or irregularities you need to have follow ups with an ENT specialist and do a regular check up on yourself for any changes.
All the best and I am so happy to hear the good news, Sophie

Thanks for the advice Cheryld and Sophie! They actually moved up my ENT appointment, it's not the ENT I wanted to see unfortunately but its at Credit Valley Hospital in Mississauga (near Toronto). So I'll see how that goes on Thursday this week.

Cheers, relieved for you! Sophie