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"OCF Canuck"
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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...

Last edited by MrStressed88; 10-01-2014 10:56 AM.
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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!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
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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 wink


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
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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


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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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?

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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.


Stage 1 SCC on tongue 3mm (7/1/14)
Biopsy had clean margins
Successful Surgery to remove more tissue and confirm wider margins (7/8/14)
Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road.
Non Smoker, Social Drinker (pre DX, but no more!)
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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...

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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!


Stage 1 SCC on tongue 3mm (7/1/14)
Biopsy had clean margins
Successful Surgery to remove more tissue and confirm wider margins (7/8/14)
Hoping I'm one of the lucky ones and this is just a small blip in my life, and just makes for a story of "how I spent my summer vacation" down the road.
Non Smoker, Social Drinker (pre DX, but no more!)
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[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


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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"OCF Canuck"
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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.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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