Hi there... welcome and I am so sorry you have to be here.

You are me... but I am a bit older. However I have NEVER smoked, or drank, and have never done drugs. I had a problem for a long time, so I contribute the fact that I don't do all that other stuff with holding it in check for such a long time. Chances are your smoking didn't necessarily cause it (though traditionally this is a disease that affects the older male population, who are heavy smokers and/or drinkers and have been for an extended period) However, you need to stop because I can pretty much say with certainty that probably it contributed to it and will impede your survival rate, and healing if you continue through treatment.

I'm not being facetious, and not preaching... I looked up information at one point on survival rates and under one of the studies done, it had a stat - smokers, who continued smoking through treatment as opposed to non smokers or those who quit and walked or exercised lightly for an half hour a day (I dragged my butt and my dog around the block twice daily through treatment no matter how crappy I felt) - anyway... long term mortality rate for stage 3/4 for smokers - 95% at the 5 year mark. Non smokers 60%. In other words. only 5% of the smokers survived, as opposed to 40% of the non smokers.
Those are grim odds to begin with - if you look it up - a 50-60% survival rate is most the prevalent with this type of cancer (much lower that breast cancer) The higher the stage, the lesser the rate. (this does NOT include HPV related cancers - which - because it is virus born does respond better to radiation and chemo)

Now before you freak out completely - these should all be taken with a grain of salt - it's a melting pot of people who are all ages, with all manner of health issues, etc that are involved in these studies... And to quote one of our members here - realistically speaking the survival rate is either 0% or a 100% when looking at the individual. But my point I guess is... why not do whatever you can healthwise to fall into the lower of the mortality rate categories? Also I am not sure what others will have to say on this subject here but drs will look at you two ways... is he or she willing to do what it takes to survive? And why am I treating her if she is not going to help herself? It's a bias that exists no matter what anyone says.

I don't want to scare you. However knowledge is power. So you need to know some serious answers to your questions.

Is it common at your age? We've had quite a few members that are your age, our youngest being in their late teens (18 and up). One thing I've noted that the younger you are the more aggressive this cancer can be (the extent of involvement in such a short time tells me that yours might be quite aggressive)
What causes it? Drs. don't know. I think long term chronic irritation can come into play (alcohol and cigarette smoke (the chemicals and toxins are definite irritants), this makes complete biological sense. However some drs believe this, some don't. At this point - it doesn't matter - you've been diagnosed so you need to deal with it asap.

Treatment - (assuming this is non HPV - which oral tongue cancer normally is) is usually - surgery - this surgery is quite involved - if the area is as large as you mentioned you will likely have a hemiglossectomy, followed by a graft of the area removed. This means they will remove skin and a vein or artery from somewhere else - likely wrist, or thigh. They will rebuild the area of tongue removed. Then they will remove a piece of skin from somewhere else to cover the graft area (if they take from the wrist) They will also remove a bunch of lymph nodes in your neck. All will be tested to tell you definitively how extensive the cancer was and whether they got clear margins.

They are looking for certain things, like nerve involvement (in the tongue), extracapular extension (leaking outside the node) - Or extensive nodal involvement (more than one or two nodes). Any or all of these things is an indicator of further treatment needed - which is radiation and chemo.

Surgery (its usually at least 10 hours) is not as bad as it sounds. You look like a train wreck for a few days (immediate recovery time is 8-12 days - depending on the hospital they may keep you there the entire time. I was in 10 days) but its 6 weeks for full healing) Then at the 5 or 6 week point if they recommend it radiation and chemo will commence.

Of the two treatments -rads is the worst. After surgery you will not be able to talk for about 2 days (bring an Ipad or something to write with). They may put in a trache tube for breathing and this will prevent speaking, after they will change it to a trache you can talk and breath with, then they remove it completely usually the 3-4 day mark. You will have an IV, catheter and feeding tube (through your nose) you likely will not be allowed to eat until day 8-10. All of this including arm dressings and leg dressings will be removed over the first few weeks. (unless there are complications) Your shoulder, neck and face from your ear down will be numb (hence minimal pain!) it feels weird and does minimize eventually though I'm almost three years out of surgery and I still have numbness in certain areas. You will have a scar from behind your ear to the midpoint of your neck (it heals cleanly and eventually fades) If they remove nodes from both sides this scar will be longer. Your new tongue will be quite swollen but it will eventually thin out and you will learn to eat with it (I was eating soft foods by week three with no problem - I'm a veg head though so meats may be a little challenging at first I can't say). You will drool a lot. It's part of the healing process. You will need to be suctioned both in your mouth and through your trache. I was best friends with the suction machine while I was in there. BTW suctioning through the trache is HIGHLY UNPLEASANT!!!!!

Your shoulder will be weak and arm hard to move - they cut a muscle in your neck when removing the nodes (during the neck dissection) this effects your shoulder - you will likely need physio and you will have lymphedema. (swelling in your neck and face on the affected side)

I know it sounds completely daunting at this point and I know it seems like information overkill, but knowing allows you to plan and most importantly advocate for yourself.

You need to know definitively what stage you are, what your differentiation is, and nodal involvement, what exactly your surgery entails. Most importantly it is your best interest to be seen at a CCC - they have a team approach to treating this cancer and it makes things generally move more smoothly, and quickly. Push to have them do what they have to ASAP. hugs. and best of luck. We are here to help with any questions, or concerns.

And sorry again if I have scared you. I know it all sounds rather harsh but the reality of it all is - walking around with blinders on can cost you your life. take care