Hello Everyone, I hope I am posting the right way , first time
I REALLY need some advice as I am a Newbie on the subject of Oral Cancer. From what I have been reading on this forum, you all sound very caring and have LOTs of info to share. I hope I can return some hope as well to you all sometime soon. My Story: Last week I discovered a whitish mark on my right inside cheek and a reddish mark on my left inner cheek. I havent seen a dentist in over 5 years (chicken) and wanted to get my teeth fixed anyway so I went to a very good dentist in my area (Ontario), he thought maybe my teeth were rubbing against my cheeks so he smoothed them to find out if that would solve the problem, I also have a painfull lump inside my inner cheek on the right , I also have pain in my left inner cheek but no lump. Went back about 5 days later to see if smoothing my teeth helped my patches but did not. Dentist then referred me to an oral surgeon that same day.( Forgot to mention that my nodes on or under my jaw on right side has been swollen for about 4 months and my face has drooped ) I had to tell the surgeon that I have a lump inside my cheek that is very painful, he seemed more interested in my lymph nodes swelling, so now he has referred my to an ear, nose, throat surgeon ( OTOLARNGOLIST) that is supposed to be world renowned surgeon in another city !!! Sorry this is very long.
My question is could/should I not get the lump biopsied in the mean time to get a move on treatment as my appointment with the specialist will be a very long wait, Im talking months maybe a year just to see him !! I need to know if this lump is cancerous or not as I have very bad anxiety. I can get the biopsy done by Oct 17th. Please, if anyone has any advice or experiences like this I really need to know.
Thanks in advance for any responses.

Scared Kim

Hi Kim,

Glad that you found this forum which is extended family for most of us. Regarding your question, only biopsy can confirm if the lump is cancerous or not. I would suggest you to visit a CCC or a good ENT in your city who get that biospy done quickly (Oct 17th is too far). Any patch on cheek or lump lasting more than 2 weeks must be examined. IF it is cancer, then timely treatment will help and improve the prognosis.

Take good care of yourself.

Hi, Brave Kim
I'm just going to say welcome, and agree that you shouldn't wait months for an appointment! I am sure that one of our Canadian OCF members will on negotiating your healthcare system.

Kim,

You do not need to see a world class ENT to get biopsies. Just get to a good one in your town. If you ever ended up with the biopsy showing something serious, then you want a world class doctor to treat it. Right now you just need to know if it is serious and you need to know that as quickly as possible.
In general, oral cancer is not painful and typically only shows up on one side of the mouth. From what you are telling us it could be anything, so get those spots biopsied by any ENT as soon as possible and give yourself some peace of mind.

You will hear this often here �ITS NOT CANCER UNTIL A BIOPSY SAYS ITS CANCER�

Welcome Kim, and I hope you get a biopsy asap and that it's negative. Please keep us posted.

Kim,

Listen to the posts above get the biopsy ASAP.

Take care...Keep us posted.

Connie

Hi, Thanks to all of you that have or will answer my post.
I just came back from seeing my Primary Dr. He said the oral surgeon probably just didnt feel like doing it so he passed it on. I think because he was concerned about the swollen nodes which he does not do. But anyhow my dr said there was no reason not to get it biopsied in town so I have an appointment with another dentist that WILL do it on Oct 17th, thats the soonest I can get someone in this town to do it, plus its going to cost me 104.00 for the pathologist report which I cant complain, its money well spent in my mind. If it IS cancer then I will certainly go to the "world renowned" Dr. LOL
In the meantime I will keep reading these very informative posts and wish everyone good health.

THANK YOU
KIM

Hey there - okay - I'm from Toronto and I have never in my life paid for a pathology report - unless you"re a newly arrived Canadian - its all covered by OHIP - I don't know if they're charging you because it's a dentist doing it or what but here's my suggestion. Find an ENT that will take you ASAP! Call them - explain why you need a biopsy - tell them about the node, (if it's swollen and palpable, and you test positive it will have to come out along with a few of it's closest friends. ) if it is in your node it has already moved - this is why you need to be seen immediately. If you've had this node for 4 months that is a long time! Tell the ENT secretary this. I don't want to scare you but time is very important. If you wait until the 17th the path can take up to 10 days! That puts you almost into November. That's too long to wait. Call around find out who in your area can take you the quickest. Then get a referral from your GP. Tell them you are willing to be put on a wait list - and can be ready to go in no time. That way if they have a cancellation they can and will call. If you do test positive, the next steps are referral to a top notch ENT and a ct & MRI. If you are okay with paying, call around to dental surgeons too see who can fit you in. You don't say where you live in Ontario. But if it's close to Toronto, PMH is the best place to be treated. If you're not its still the best place. priority one is definitely the biopsy! Do not wait - sometimes you have to advocate for your self. push - make noise. Welcome ! And I sincerely hope you simply have an infection of some sort, so you don't have to be here - take care an do let us know what happens. Good luck! Btw - the dental surgeon should have biopsied your cheek. He definitely passed the buck which is a no no. It's cost you precious time. If he had done it like he was supposed to you would know the results that much sooner. And if it is positive then chances are your node will be too. I know some ENTs shy away from doing neck dissections, but usually the procedure here in Canada for a positive oral cancer (tongue, cheek, gum, and jaw) - non HPV related - is surgery first - including a neck dissection. So that node at this point is of little consequence. My surgeon told me I was having my tongue (1/3) replaced, and 40 nodes removed despite the fact that none were highlighted on the scans, thankfully he removed them as one started to swell in the 2 weeks over Christmas - and tested positive in the post op pathology Okay sorry - I may have said too much, but your dental surgeon has peeved me off! take care!

Yup....I suggest to go to an ENT, not just a dentist. If they say they want to do a brush biopsy, I would ask them to not, as they aren't always accurate. With the swollen nodes, you should really see an ENT who can biopsy and order scans like CT or PET which will help them see if anything else could be going on.
Hope it's not cancer!

Cheryld, Yes I am ticked off too. I am about 1 1/2 hr away from Toronto, I was actually born and raised there. My question is what does PMH stand for ? Is this where you went ?
How long did you have to wait ? I know from researching not to get the brush biopsy but what one will they do between incisional or excisional. I just want this darm thing out of my mouth !! I dont know if I mentioned earlier that this lump I have is embedded in my inner cheek if that makes any difference as to what it could be. I will get on the phone tomorrow and call some ENT's, even if I have to go out of town.

Thanks so much for all advice and info
Kim

Kim, I went to an ent who did a needle biopsy on the swollen gland. Stung a bit (OK, a lot) but at least not so invasive. When the path report came positive for malignancy, he sent me for a pet scan to see just how much was affected. I don't know a lot about your system there, all I know is that one of the arguments conservatives here use against it is the long waiting to see o doc.

Yes PMH - princess Margaret hospital - the top hospital in Canada - one if the top two in north America - one if the top 5 in the world. I live in Mississauga 20 minutes away - I could have gone to trillium - or credit valley but a friend asked a top notch ENT guy she knew - who he would send a family member to and he recommended dr. Irish at PMH. He is very good. Not really a hand holder but very very talented. (hes a head and neck surgical oncologist) if you have to go through radiation and chemo - PMH has a lodge you can stay at during the week days -If you're from out of town. Dr. Irish nor any of his colleagues will see you without first having a biopsy, & CT, once you have those his office would set up an MRI . Then an appointment - but he's very quick!
I had my biopsy on Dec 10 - results Dec 20 - CT (with help from a friend) Dec 21 - results same day - ) they usually make you wait a day or two - I was lucky - once I got my results I had my dr sign a referral - and faxed it and all my results directly to dr Irish myself. There was a short break over Christmas everything slows Down - dr Irish set up an MRI - I harassed them to put me in an empty spot (they save some for emergencies) I saw the dr. The next week, had my surgery 2 weeks later - diagnosis - surgery - 5-6 weeks - partly because if the two weeks Christmas break! push! Seriously! And my tumor in my tongue was there for years! The area was sore but there was no physical sore. It felt like a lump inside my tongue. I truly am blessed that everything moved so quickly. When you talk to the ents explain your history - tell them you are desperate. If they can fit you in you will have your dr fax a referral. Then call the Drs office explain you found someone to take you and ask them up fax the referral. good luck - I hope everything works out!

Kim, I responded with detail on your other thread. Any sore that has been in your mouth for over 2 weeks should be checked by a professional. I have had surgical biopsies with being put under, with a local numbing shot and also with nothing at all. Its not a big deal to have a teeny tiny piece snipped from the inside of your cheek. It hurts for a couple minutes then its no big deal. Good luck!

Kim, regarding your question about biopsy:

With incisional biopsy, only a sample of tissue is removed with preservation of the histological structure of the tissue�s cells. With excisional biopsy entire lump or suspicious area is removed. I would also not suggest going for brush biopsy as it is not always conclusive.

Christine has briefly described the process. All the best and get that biospy done quickly.

Kim,
Welcome! I think you should definately go see an ENT asap! Be persistent and demand some actions be done! Praying that things can go smoothly and fast and that the scans/biopsies come out negative!

Chery and Kim, you need a referral to an ENT and that as we all know here in Canada can take 4-8 months!! The $104- charge from the oral surgeon is pretty good! Dissappointed though that they cant see you till October! (Are you in a rural area??)

I had my first tongue biopsy a week after my doctor referred me to an oral surgeon. The cost was over $300- came back as moderate dysplasia (lychen planus) 2009

I was then refered to the Oral Cancer Screening Clinic (part of BC Cancer Agency) in Vancouer where I was living and was followed up every 3 months after that. Jump ahead to 2011 and I moved to Calgary where they have no Provincial Oral Cancer Screening Program (stoopid!) Took 8+ months to find a family doctor and get a referral to an ENT, I have one now and he took a biopsy Sept 2(it had been a year since my last one) and its now positive for 'superficial cancer'. Surgery booked next week. I guess that means stage 1.

So Kim, get the biopsies done ASAP and pay the $$ then you will get the referals to an ENT or Screening Program in your area for follow/up... Listen to your gut instincts.

Hi there I know the deal with referrals. I'm from Toronto. However, what people don't seem to realize here is that you can circumvent the system. Waiting is not an absolute. No dr. Or health care professional will tell you this. But here's the situation. I know someone who works for a hospital big wig. She was the one pushing me to push. If you do the leg work yourself you can get in much earlier. I found out the name of the best person to go to here in Toronto. Called my family dr. Went to see him. Told him who I wanted to see -he wrote out the referral. I took a copy of my records - bloodwork - chest and abdominal cts -and faxed it to the specialists office. Then I called the next day to confirm they received it. the secretary said yes but the specialist wanted an MRI - from princess Margaret (in house) this was over Christmas. They run half shifts half staff during that time. I called them at diagnistic imaging repeatedly once they'd received the requisition (they originally had me slated for feb 4 th). Said to them I would take any cancellation. I could be there in 30 min if need be. The first Tuesday after new years. I called again. They said they had emergency spots open for the next day - if they didn't have them filled by noon I could have it. I called back at 12 and was given the spot. The specialist received my MRI a few days later and I was in to see him the following week. If I didn't need the MRI I would have been in there 2 weeks earlier. They always have emergency space available. All you need to do is push. just to give you an idea - my first ENT wen out of town over Christmas - told me to book an appointment to see him when he got back - he would give me he results then! He was back January 4th!!! I told him I wasn't waiting that long as my biopsy was dec 10,,,, he said I could get it from my family doc which I did - he's a great patient advocate. The minute he found out I had scc - I was given an immediate ct and bloodwork. He wrote out the req. His secretary faxed it to the hospital. I got in the next day! The Results - because I had my Drs office call and put an ASAP on it - the were available the same day! I was in surgery the day that PMH had originally set me up for the MRI. You need to advocate for yourself. Making a pest of yourself is nothing if it means saving your life. Too many people are willing to accept that you have to wait. hope your surgery goes well Tracy.

Good Morning Everyone,
You guys are the best !! I DID push yesterday and good news, I have my appt with my ENT on Friday at the hospital for possible biopsy !! Funny, I was going to call the office back and ask to be put on cancellation list, then I finally realized its only 2 days!! LOL. Oh boy , I'm really really nervous now. Its what I need to do but I'm freaking out now about the actual biopsy procedure. Now itshappening so fast, yikes. Oh well I will make it.

I Love this forum !! Like I said I have no one to talk to about what I am going through, even though I do have a husband.

Wishing everyone a good day.
Thank you, Kim

Kim,

The biopsy is a couple of little pinches on the tongue. I asked the surgeon NOT to let me see the needle or there would be a problem. I closed my eyes from the start to the finish. I felt a couple of pinches and the rest is history.

If your queeze like me tell him you don't want to see anything.

Keep us posted. Good Luck with the biopsy and no to a brush you want the real deal.

Take care and Good Luck keep us posted.
Connie

Don't worry about the biopsy. Like Connie said, it's not very painful and it's over in a flash.

Agreed - it's quick. Relatively painless they are supposed to freeze you though it my hurt a bit after you thaw. I am so glad you got in early that's great! It's scary this whole thing is but knowing is important. Good luck - I sincerely hope it's nothing. But if it is we're here to help and listen. Take care!

Kim, let me correct what Connie wrote.... YOUR biopsy would not be done to your tongue. Her biopsy was on her tongue since thats where she had the problem. Yours would be of the spots where your mouth is showing irritation. It is correct that its not a big deal. I would rather have a biopsy done while awake without any numbing at all. Its one minute of a tiny pain but then its over, no big deal. Not a big enough deal to get put to sleep or all numbed up for.

Best wishes tomorrow!!!!

Hope the biopsy went well today and be sure to keep us posted on the results!