Been reading posts for a few weeks....scared presently. Here's some info on me. Went to dentist for 6 month cleaning 10/31/11, he noticed white strip under left side of tongue. Referred to oral Surgoen for biopsy, had two (cores i call them ) taken. Came back one with SCC in situ, the other sample was microinvasive SCC. Just had the area and then some removed monday 12/5/2011. Surgoen will send that off to be evaluated is what i hear. return for post op visit this monday 12/12/2011. Kinda freaked out, should i be doing more? asking for more test? i dont understand alot of terms used on here...show i get lymphs checked? looking for suggeastions...or ideas on what i can or should even ask.

Your situation sounds exactly like my husband's (see my signature, below).

His leukoplakia was completely removed by a local ENT -- since the diagnosis from the oral surgeon's biopsy of two small areas was moderate dysplasia, not cancer, there was no need to seek out a cancer specialist at that point. Once the pathology results of that excisional biopsy showed SCC in situ/small bit superficially invasive, my husband had a PET scan to check for any spread and got an appointment with an ENT at the Sidney Kimmel Cancer Center at Johns Hopkins, a top comprehensive cancer center about an hour from our home.

The local ENT (a fine doctor, but not a cancer specialist) was talking neck dissection, radiation, etc. The doctor at Hopkins -- who sees oral cancer all day every day -- determined that no further treatment was necessary. My husband was initially seen at Hopkins every couple of months; as time passed, the interval between appointments lengthened, and now he's checked at Hopkins once a year. His dentist gives him a VELscope exam at each visit as well. Five years later, so far so good, knock on wood.

My word of advice is to get a second opinion from a comprehensive cancer center if you're not being seen at a CCC already -- and if you are at a CCC now, you may want to get a second opinion from another one, especially if your doctor recommends additional surgery and/or radiation. Many here have traveled hundreds or even thousands of miles for their second opinion (frequently at M.D. Anderson in Houston or Memorial Sloan-Kettering in NYC, the top two cancer hospitals in the US); if you prefer staying closer to home, the Eppley Cancer Center at the University of Nebraska Medical Center in Omaha is a member of the National Comprehensive Cancer Network, an alliance of about 20 top cancer centers that together develop and publish the annual state-of-the-art treatment protocols.

Ask any questions that come to mind -- this is a great group for information, advice and support.

My advice: you can't be too careful, given your findings.
My was supposed to be superficially invasive, so certainly not much beyond yours. My initial PET scan showed no lymph nodes to be concerned with. Insist on a referral to an ENT, or refer yourself if you don't want to insist. It's a free world. Best is to get to a comprehensive cancer center. You are in Nebraska, not sure what is there, but I know Omaha has more size and facilities. You need to go to an ENT who sees a lot of head and neck cancer.

You might well be ok without incident, but do not take it for granted, nor let anyone else take it for granted.

Best,
Anne

I agree with anne... It's great that you caught this in the early stages but it can sometimes be agressive so do get a second opinion. - you should at least be scanned and have your nodes checked. Good luck and sorry you have to be here!

Thanks for your replies Leslie, Anne, and Cheryl. Everything seemed to happen so fast, head still spinning. The oral surgeon that took the biopsies and removed the area plus a lot of surrounding tissue is affiliated with Creighton University�s Head and Neck Cancer Institute I just found out, so it appears he has exposure to the issues. I�ll find out what is found in the area removed, since two small needle biopsies may not be representative of the entire area, which was originally believed to be leukoplakia. Good advice on seeking a second opinion, and there is as Leslie pointed out a Cancer center at the University of Nebraska Med Center here in Omaha, thanks for that tip Leslie. I�ll talk with the oral surgeon that I started with and go from there, trying to get educated right now and you all are helping thank you for that. How aggressive is this cancer? I guess that�s a stupid question as it probably differs per case, I don�t know, I�m full of questions right now and I better start writing them down because thinking of them at 3:3o in the morning and forgetting them isn�t helping��So in your opinion this would be considered catching it early? Does that matter with this type of cancer?

[quote]So in your opinion this would be considered catching it early? Does that matter with this type of cancer? [/quote]
Yes, you've caught it early. And yes, it matters.

I'm certainly not saying that you will need no more treatment -- that decision will depend on further tests and your doctor's recommendations, and you'll want to take whatever you hear in your second opinion into consideration as well. But it is far better to have caught this at the earliest possible stage of cancer (in situ) rather than giving it an opportunity to spread.

If you haven't started doing so already, take a look at the main pages on the Oral Cancer Foundation website -- there's a lot of information there that will help you learn more.

Yes, it is great to catch these things early, but you are correct in wanting to know the entire story now. Cancer in the mouth is not like cancer on the skin where a tiny bit of it might not be as devastating. My superficially invasive cancer was in reality NOT, and all the labeling in the world did not change that. It was supposed to be early and non-invasive as well. Probably it won't happen to you, but I never had a larger patch of leukoplakia either. Everyone's different.

Second opinions are great, even third ones when it comes to cancer. Sounds like you are on the right track.
Best,
Anne

Hi there! I agree with pretty much everything said (again) - different cancers have different temperaments! They may share the same name but that's it. I think a lot of it has to do with how your body works. Anne's cancer as she said was supposed to be small and superficially invasive - a T1 (check out the size listed in her footer)- I believe she'd had it a short time - id had mine for 5-6 years! It was bigger a T2 1.4 cm deep x 2.4 cm wide - yet we both had the same node involvement - 1 node with ECE (extra capular extension - when cancer has grown outside the node). My node was clear as I had scans right after my diagnosis - and at that point it was localized - then within weeks I had a 1.5 cm node. The differentiation of the cancer is important as it generally indicates agressiveness - well differentiated means it is most like your own normal cells and is generally the least aggressive - moderately - is middle of the road - and poorly is spastic... Least like your own cells and often very aggressive. The up side to poorly is because the poorly diff. cells are so malformed (they reproduce quickly thus don't mature and don't have all the right components)- chemo and rads are more effective against them. But catching them is the hard part because they get around. To muddy the waters further - you can have 2 different differentiations - my original tumor was well differentiated - my node was moderate to well. When it moves it changes. So that probably didn't answer your question all that well, but at least maybe it familiarized you with some of the lingo. Bottom line you definitely caught it early - I think you said about a needle biopsy... If so then they may need to remove more! You're looking for clear margins - and even then - after a second or third opinion - one of which should be from an ENT - from a good ccc - if they recommend more treatment - go for it. Good luck. My hope or you is that this is just a blip in the road for you. take care!

Hi Michael,
Welcome to OCF and I see you are already getting great advice from our members.
My first thought when I started to read your first post regarding the white stripe under the tongue was leukoplakia. As you can see by my signature this is what I had and it eventually turned to cancer. Your later post says they "originally believed" it to be leukoplakia?
I can see from your post that your head is spinning right now and you should know that there is no such thing as a stupid question here.
It is only a little while to wait now for the result of the needle biopsy if you get them on Monday 12th.
I am a little unclear if you had a more thorough biopsy when you say you had 2 �cores� taken? You will no doubt have a lot more questions when you get the result so ask away as there are many here to help you.

Hi Michael. Welcome to OCF! You have been given great advice so far. A second opinion at a cancer center would be a very good idea to determine if you need anything else done. Best wishes with your recovery.