So, I have just been diagnosed with oral cancer. A spot on my tongue that's been there for a long time, became two spots on my tongue. After a long wait, I finally had them biopsied and they are cancer.

It never, ever occurred to me that I would get oral cancer. Don't smoke, rarely drink, just don't have the risk factors. And, who hears about oral cancer anyway? Breast cancer, cervical cancer, but oral cancer? I assumed that unless you weren't 80 and a lifelong smoker, oral cancer wouldn't be an issue.

Imagine my surprise when my Dentist freaked out about these spots, or the 'tongue on fire' after the biopsy.

I am waiting to have a CT scan done to find out whether it is moved into the lymph nodes. And, have consented for a tongue resection - removal of what I consider a good size chunk of tongue.

When talking to the Doctors, the tongue resection seemed the best course, but now I wonder if I should have looked at options that would preserve my tongue? Radiation instead?

I don't know, all I do know is my head is spinning.

Welcome to OCF, lwp. It is both a sad and happy event. Sad you got a cancer diagnosis, happy you found OCF so early. There is tremendous information here. Start reading all you can. Find out if you are HPV 16+ as treatments are much better at slaying the beast. Also fill out your signature so we can read your full diagnosis and where you are in the process.

Since you are in the early days, work hard at getting to a comprehensive cancer center (CCC) or minimally ensuring your case is managed by a team approach. Lining up a second opinion is also a wise option.

Stay close here, ask plenty of questions as there are many who have been through this and can offer first hand tips.

Good luck,
Don

Hi there I would definitely go to a CCC for treatment - that's important - but your dr is right in track with treatment for this particular type of cancer. Firstly - hopefully it's an ENT with a strong background in dealing with tongue/oral cancer (preferable one wh deals exclusively in it ) secondly have they mentioned a neck dissection? This is often part of the treatment for this cancer - even if your nodes come back clean on a scan - microscopic cancer can be there and undetected.
There are different kinds of oral cancer. Usually oral tongue is NOT HPV positive - and it treated first with surgery then depending on the pathology possibly radiation and chemo. HPV + cancers respond more readily to rads and chemo so they are often the first treatment offered (unless it's found in the tonsils).

Compared to each other believe it or not the surgery while daunting is way les disruptive and catastrophic that rads and chemo. Hugs and welcome

Good morning LWP - Yes, I too welcome you to the family. Right here is where you will get the best information possible for fighting this beast as well as keeping your sanity while doing so.

The shock and confusion you felt on initial diagnosis is the same all of us felt. Unless you already knew someone who had oral cancer chances are you knew nothing about it beforehand. That feeling of being hit hard in the face upon diagnosis, we felt too. Fortunately, and like you, we found the forum and immediately started benefitting from the warmth and support that exists here.

You have a steep learning curve to negotiate over the next couple of weeks before treatment begins. Go to the OCF website and start reading all the pertinent literature there on diagnosis, treatment and any other area you feel you need to know. Get a spiral notebook because reading that stuff is going to generate a thousand questions you will want answered; questions for your doctors (surgeons, radiation oncologists, medical oncologists (chemo) and question you want to ask here on the forum). The next week or two will be a busy time for you, but by its end you will start to get a handle on what's happening.

Only other piece of advice I will give right now is to try to not overly worry about this stuff. What form of cancer you have, what caused it, who you got it from (if it's HPV-16), how hard is the treatment, will I have to stop working, etc. Worrying about those things won't help anything, all they will succeed in doing is keeping you awake at night, unable to sleep.

Instead, spend your time in more productive ways; learning about the beast from the website and forum, reading a good book, watching a good movie, visiting with friends and family. Start eating now; eat a lot, all the good things, the fattening things, the tasty things. You are going to lose some weight during treatment, so it won't hurt will help to have some extra weight before you start.

Get started learning now, come back to the forum when you have some questions or need some reassurance that you are in fact going to be okay throughout this ordeal. We got through it, you will too.
Tony

LWP, welcome to OCF! Best thing you can do for yourself is to find the very best medical team available to you and go with it. At a comprehensive cancer center (CCC) they use a team based approach where all the specialists get together and discuss each case individually and then make a treatment plan. Once you choose your team and plan then you must put your faith in them and try your very best not to second guess your choice.

There are quiet a few members who are like you... no risk factors. Yours also could be HPV+. Only thru tissue sampling with the biopsied tissue will you know if its HPV or not. Regardless of the cause, treatment at this time would be the same.

At this time you should be doing a few things. Read and educate yourself about your illness. There are thousands of posts right ehre on the forum, and dont forget about the main OCF pages too. Eat everything! Dont be concerned about gaining a few pounds right now just eat all your favorites, even desserts. Your treatments will likely impact your ability to eat and its terrible having cravings while in the middle of treatment and you are unable to eat what you want for possibly a few days to several weeks, maybe months.

We are in your corner so stop by often to read, update and even to vent. We are here for you. Best wishes with everything!

Hi all,

Thanks for the warm welcome. I'm in Canada, and am fortunate that I live in Ottawa which has a really great cancer clinic (CCC I think is the acronym you guys are using). Downside for me is that my mom passed away after a two year war with lung cancer - so sitting in the same waiting room was hard, and that I'll spend more time there isn't that enjoyable.

My hope is that this has not spread to the lymph nodes, but reading some of what is posted on the boards is making me concerned about not going ahead with a neck dissection and removing them now, since I know that the cancer has been there for a while.

The oncologist did mention the possibility of a neck dissection, but said that they generally do it, even if the CT scan is normal, if the area is larger than 4cm and mine is 3cm (sorry for the metric my American friends...). Again, awaiting the CT scan, but the hope is that this is a T1M0N0, which is, of course, my hope as well.

Plus, even though an oral surgeon 'tried' to remove the tumours on Jan. 27th, one has come right back with a vengeance. I wonder if the surgery 'stirred' up the pot, and I wonder what part stress has to play in getting cancer.

I have to be honest, the more I read, the more freaked out I get. And, the HPV issue has not been mentioned by anyone to me, something to put in my book of questions!

Gosh, I'm sorry, I'm not even sure this was a coherent reply... Just a note to say thanks for the kind words, and good to see so many survivors out there.

LWP - you've gotten some great advice from some of our most knowledgeable family members (of which you are one now as well). As others have said, there's not much that can prepare one for hearing a diagnosis of cancer. But you sound to be in a good place both mentally and with respect to your medical team.

Please keep us posted and keep asking questions. We're all here for you 100%, inches or centimeters!

Courage.

LWP - everything in your post sounds just fine. We were all freaked out at diagnosis too, so we will cut you some slack. As David said, you seem to be handling this pretty well, and better than some who have come before you.

As for neck dissection; I've heard that microscopic cancer can occur in the lymph nodes which may not be picked up on a CT scan. This is why they are considering dissection with a negative CT result. If they recommend dissection, flow with it, trust your doctors to know what they are doing.

A CCC is a comprehensive cancer center. All cancer centers are not CCC's. There are only about 20 CCC's in the U.S. but they are the absolute best in the country, the world renowned hospitals, with names like Mayo, Sloan-Kettering, MD Anderson. They have the best doctors and the most experience with each form of cancer. All that experience really does make a difference. I know Canada has some good cancer centers. Our Canadian members will point out who they are.

Did your doctor "stir the pot" when trying to remove the tumor before? Believe it or not, that is a fairly common phrase, even my RO said treatment (in your case surgery) made the tumor "angry".

You are still in the earliest phase of your learning curve about cancer. I expect everything you read that sounds bad, you are thinking oh I hope that doesn't happen to me, or what will I do if it does happen to me. In the beginning most new members think this way. The trick is to get beyond that, to get to where you can read all this stuff and learn from it as if it was happening to someone ELSE. My first week of reading was pretty freaky
too, but then it smoothed out after that. Most of that bad stuff didn't happen to me. My journey through treatment was pretty smooth.
Will your journey also be smooth, who knows, everyone is different (you will hear that over and over, ad nauseum). But, it's true, because we are all different. What happens to me may or may not happen to you.

I think one of the things that helped me most during my first month was getting on the forum and talking to other new members. We kind of reassured each other that we were not alone and that we would all get through this together.
None of us knew much about cancer, so we had to depend on the old-timer members for that, but it was comforting to have a group of people just like us to go through this journey with.

Discuss with your doctor the HPV-16 issue. If you have more surgery ask that the tumor tissue be sent to pathology for HPV examination. The doctor will probably do it anyway, as he will likely want to know. While HPV-16 is an STD, it being the cause of your cancer is a good thing because these cancers respond to treatment better and have higher survival rates.

Keep reading and asking questions, you're doing just fine. We are here with you every step of the way.

Tony

Hi there - again. I'm in Toronto - I was treated at princess Margaret hospital by one of the top ENTs in the country - my tumor was 2.4 cm he removed 40 nodes even though my scans - 2 of them - were clear. It was a good call. I felt one pop up between the biopsy and surgery and one of the scans was after this thing popped up, anyway it came back cancerous and leaking into the surrounding tissue - which is what the pathology said.
Anyway as I said previously this particular cancer is treated with a resection, dissection and hen follow up rads and chemo if necessary.
Don't get freaked get educated, this will allow you to advocate for yourself. I hear you about your mom, I lost mine to lung cancer as well, got through my own treatment then spent the last 4 months taking my father in law for treatments at Pmh for esophageal cancer .. hugs - you will get through this.

LWP - You WILL get through this. Everybody goes through the "freaked out" stage. It is important to inform yourself as much as you can through what you learn here or on the main pages of OCF. Be sure and write down all your questions for the doctors at your next visit and bring someone with you if you can so that you can check back with each other on what was said. When the negative thoughts start to attack your brain, just give them a time limit - like 2 minutes or less and then switch to all the things that can go Right instead of wrong. Keeping busy is very helpful, deep breathing and hanging on to the positives in your experience. Come here often. When my son was diagnosed with Oral Cancer with no known risk factors, I was a basket case of frantic worry but we both survived beautifully and he's been cancer free 7+ years!