I have only found one other person with this cancer,there must be more out there,i read that it is aggressive,im scared,would like to hear some encouraging survivor stories of this tumour if possible

I have had this. It is Squamous Cell Carcinoma (SCC) of the buccal mucossa. There have been several members with this as well. You are NOT alone!!!!

Please add a signature when you are able to. That will help us to help you by knowing where you are in your treatment timeline and a brief history of what you have been thru. Are you in the US?

A cancer diagnosis does not always equate to a death sentence. I have gone thru this 3 times and I have lucky survived. I know its scary, with our support we can help you to get thru this.

HI there... it can be an aggressive cancer. Ideally you want to move quickly. There are several people here who have had it so as Christine says... you are not alone. Just remember there really should be no ambivalence with regards to treatment as time is of the essence. You should be treated at a top CCC - since they see and treat this cancer all the time and know what works. Try not to freak out... though I know the word cancer is terrifying. You have to be diligent with this cancer, and be aggressive back. What you are facing is not fun... no one here will lie to you. But you will get through it. Educate yourself on the standard treatment, you are your best advocate. hugs, welcome and sorry you have to be here, but this is a great resource...

I was diagnosed with SCC of the buccal mucossa of the left cheek a year ago. I had it surgically removed and a flap from my forearm put in my cheek. I decided not to have radiotherapy as I had clear margins. It is scary but it is beatable.

I had a petscan it showed cancer in one neck node,im to have a neck dissection,i have had a sore tounge that comes and goes but petscan showed no other cancer cells present anywhere in my body

From what you just wrote I can see that you have started down the road to acquiring the knowledge that will get you through this without going nuts in the process.

Cancer is like that, in the beginning we are diagnosed but we know absolutely nothing about the disease. Diagnosis is the car wreck that put us in the ditch. Most of us only heard (or remember) a little of what the doctor said in that first meeeting and we are scared absolutely to death. We all went through this, so welcome to the family.

When my tonsil cancer was diagnosed they kept using the word "invasive". Initially I kept thinking that word meant fast growing, so I was really freaked out; am I going to die before they even get treatment started. Eventually I figured out I should ask my doctor about it. He just chuckled and said invasive is just a synonym for you have cancer. Non-invasive means it's not cancer. And no, you are not going to die before treatment begins.

That story kind of describes the information journey we are all on with this disease. Sadly, in the beginning we are on an impossibly steep learning curve; we have a LOT to learn in a short period of time. But, we hang in there, listen to the advice of our forum brothers and sisters, read what they tell us to read and learn a little more every day. A week or so later that learning curve shallows out enough that we can actually sleep at night because we are just mildly scared, then later it flattens out some more; we have learned enough to accept the demon in our body and now concentrate on getting on with the treatment. For me that happened about week 3 of radiation (8 weeks after diagnosis). From then on "scared" has stayed away from my door.

After treatment is over many leave the forum; they don't really need the support anymore. But, some of us stick around, to help the new guys climb out of the ditch.

You're going to do just fine. Hang in there and keep reading. You will get there.

Tony

Okay.. scans are finicky.. they only pick up a cancer that is a certain size. MICROSCOPIC CANCER IS NOT PICKED UP ON A SCAN. If you had a node pop up then there may be a primary somewhere else ( a few people have had an occult primary - but often they are later discovered elsewhere. If you are complaining about tongue pain. I would wonder if perhaps you have something going on there and it has spread to the node. Even superficial t1 tongue tumors can spread to a node if they are aggressive. (A tongue tumor doesn't have to present as a lesion or sore either - sometimes they grow inside the tongue as a tumor - palpating the area will tell you if there is potentially something going on there.)
Are you at a CCC? I would advise getting a second opinion at one if you aren't. This cancer can be tricky. It's best to have an ENT very experienced in Oral cancer.

A neck dissection is not a hard surgery, but it would be helpful to be certain that there isn't a primary hiding somewhere, before you go in and have to have another surgery after the fact.

hugs and best of luck.

im assuming that the buccal mucosa cancer was the primary,ent thinks it went to my node before surgery,i didn't know I could have another primary?,im still new to this

It is rare to have 2 different locations of tumors at the same time. I also had 2 tumors in different locations when I was first diagnosed. My first tumor found was on the inside of my left cheek. the second one was behind my top left molar. they were independent of each other, separated by about 2".


PS... Please use the info I sent you with the private message (PM) to make a signature. It really is very important to help us help you.

No sorry I missed that you'd had a buccal mucousal cancer duh.. Yes that would be your primary - if you have nodal involvement then are the looking at possible rads and chemo as follow Up?