Hi, I am a 26 year old female, just diagnosed with squamous cell carcinoma on my tongue. I don't know the right terminology yet. My doctor says it's all over the left side of my tongue, underneath and on top, all the way towards the back of where my tongue starts. They did a CT scan and a biopsy, and those indicated that the cancer has probably spread to at least one lymph node on my left side.

Originally, I was told I had a tongue ulcer when I went in to see a general practitioner five months ago, and at that time I had had the "ulcer" for two months already.

Because I waited so long, my current doctor is saying my cancer is probably stage 3 or 4. He won't know for sure until they do a PET scan, which is scheduled for Monday.

In any case, this was a big shock to me because I'm otherwise healthy, never had any real health problems in my entire life. I do smoke, but I didn't start until I turned 20, so only for 6 years. Doc said the smoking most likely wasn't a cause.

I do have a few questions, if anyone knows the answers to them. How common is this type of cancer in someone my age? And if smoking didn't cause it, why did I get it? Also...how survivable is something like this in stages 3 or 4? I was told most likely they would remove part of my tongue and do radiation treatments.

This is all so mind boggling. What kind of questions should I be asking my doctor? He always asks me if I have questions, but I don't know what the heck I'm talking about, you know?

Any help would be greatly appreciated.

Kazy, first off: you've come to the right place for support and information. You are now officially part of our family and we'll take care of you.

People who've experienced exactly what you're going through will be chiming in shortly to help.

I'm going the leave it to the experts on tongue involvement to guide you in the specifics. But mainly I want you to know that treatments these days are very sophisticated and survivable. It's not going to be easy, but your youth, energy and good attitude are all great things in your favor.

Are you being treated at a Comprehensive Cancer Center (CCC)? Here's a list:

http://oralcancerfoundation.org/resources/cancer_centers.htm

We're with you every step of the way.

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

Thank you both for your replies. I am in NC, and have been referred to Greenville, which is where I will meet with a surgeon very soon. I don't think it's CCC...we went with Greenville because my current doctor knows the doctor there, and the financial burden of traveling is less.

It IS really scary, but I'd rather hear all of the details than have it candy-coated for me. So I really, really appreciate the depth of detail in your post, Cheryld. I am trying to quit smoking now, and plan to be completely off of it by the time the surgery comes around, which will most likely be fairly soon. My doctor did talk to me a little about what to expect--the skin grafting, the tubes, etc.--but your answer was much more informative.

So glad it helped. I know the financial stress of being away from home is a lot... however - this is your life - you cannot put a monetary value on it. Not to say that local hospitals aren't as good, but you CANNOT beat the treatment given at a top CCC - this is what they do all day every day. Cancer. I would urge you to look into a CCC if at all possible. If you have to go for treatment it is a short process (usually 6-7 weeks of radiation and chemo) and if you are from out of town they usually have a hope lodge you can stay at for free and they often are close to the hospital and / or offer free transportation to and from. You stay from monday to friday and go home for weekends.

Do ask to have yourself put on waiting lists for appointments and CTs etc... The faster you get in - the faster they can get it out. As the sooner the better. Normally the wait between diagnosis and start of treatment is 4-6 weeks so push. and hugs again. And congrats on trying to quite smoking. much success to you.

Welcome to OCF!

Dont worry, you have found a great resource to help you get thru everything you are facing. The stage doesnt matter that much. Ive seen Stage I patients not get thru it while other Stage IV will. Ive been both Stage I and Stage IV and luckily Im still here. You will soon see that so many thing you thought were so important actually are not. You will find your priorities change dramatically with a cancer diagnosis.

Please do your very best to get rid of the tobacco right away! It is full of irritants and all kinds of poisons that can cause damage to healthy tissue. You have a choice to make and you must decide whats best for you. If you want to have the best possible chances then you will realize that tobacco is not going to help you in any way, it will only make things worse. I quit smoking when I was driving down to get a consult for a feeding tube, I was horrified at the thought of having a plastic tube sticking out of my stomach. At that moment the light bulb finally went on and I realized I did this to myself by smoking, my cancer was my own fault. When that finally sunk in, I threw the whole pack away and never smoked again. I made the choice to fight to survive and tobacco would never, ever help me in any way so that was the end of my tobacco habit. I have not used tobacco for 6 1/2 years. Im hoping you will make the right decision and throw them away. It helps if you tell yourself that they will only make what you are facing worse. Ok, Im off the anti-tobacco soapbox now.

Take someone with you to all appointments. Too often a patient hears bad news and their ears stop working. A friend or relative will be able to remember things you may not. Also anyone who offers their assistance, tell them when the time comes you will let them know what they can do to help you. Write down their name and contact info for later when you need help. Everyone needs help to get thru this. You will need a caregiver. Dont be proud, accept the help of others. People will surprise you. Some close friends and relatives will disappear while others who arent that close will be by your side.

A CCC is worth the distance to get the best medical care. At the very least give it a consideration and go for a 2nd opinion. There are places that you can stay for free near most CCCs and also free airfare too. You just need to look and dont be afraid to ask for help. If you dont ask, you dont get.

We will help you get thru this so stick with us. We are in your corner and will give you advice and support.

Best wishes!

Hi Kazy:
For oral cancer patients this is likely the best source of information on the planet. And you won't find a nicer, more supportive group of people anywhere. We either have oral cancer ourselves or are caregiver to someone who does, so we know what you are going through. Realize it or not, you now have a new family of brothers and sisters many thousand strong all of which care deeply for you.

There will be times when you feel really down about it all. That is very counter-productive. Everyone will tell you to not let it bother you, that's easier said than done. If you take a long term view of this new situation you just make life hard on yourself. The way to get through this is one day at a time and if necessary one hour at a time. So, make yourself a list of things you enjoy doing, things that make you feel good. It can be anything, getting lost in a good book, listening to music, watching old movies, just going for a walk outside, watching and listening to the neighbor children playing outside, the list is endless. Keep that list posted on your front door. when the demons start calling your name, walk to the door, read it, pick one and DO IT. Don't walk away from that door without doing one.

If you can't take someone with you to each doctor visit, get yourself a pocket tape recorder. Ask the doctor nicely if you can record the conversation so you won't forget the important details of what he/she tells you to do. I think approached that way most every doctor will agree to you taping the conversation.

As you read the literature on this site it will make you think of a thousand questions you want to ask. Keep a spiral notebook beside the computer to write those questions down, don't try to just remember them. During radiation treatment one day per week is doctor day, when you get to visit with your doc. I always have at least 10 questions I want to ask, having them written down means I don't forget them.

Kazy, you are starting perhaps the most important journey in your life. Lean on this group for help, we were helped by people who came before us. Now, we return the favor for those coming after us.

It's stiff upper lip time Kazy, you can do this.

Again, welcome to the family.
Tony

P.S. Stop smoking, preferably cold turkey, lots of people have done it just that way.

Hey Kazy, sounds like a very similar situation to mine. From everything I'm hearing, this type of cancer is unfortunately starting to show up more often in people our age. Still no known reasons why, not like I sat under powerlines eating lead paint chips or anything. No good way of putting it, it just sucks. This period before actually starting treatment is especially bad. Once you find you have cancer you just want it out of you so you can start getting better, but it seems like everyone is moving in slow motion compared to what you want. My doctors had originally told us that mine looked to be around stage 2. After the surgery they had found 4 of the 59 nodes they removed were cancerous, one with extracapsular extension. This discovery immediately bumped me up to stage 4. That was a very tough bit of news to get, especially since surgeons aren't particularly known for their bedside manner. The wound up tacking on chemo to my surgery and radiation. Not thrilled about it, but if it will give me a better chance to avoid recurrence then I'll do it. Even though I'm stage 4, all the doctors agree that my prognosis is very good. I'm currently in my last treatment week so fingers crossed that I'm nearing the end of the roller coaster and heading for the lazy river portion of the park. Don't hesitate to ask anyone here for help and advice. Everyone here is very helpful, and as much as it sucks to go through this, you are family now.

Hi Kazy,
Sorry you have to be here, however, a very warm welcome to you. You will find yourself surrounded (as you can already see) by a lot of very knowledgable people. And....a lot of loving and encouraging people too. Will look for your future posts.

Hi Kazy, as you will see from my signature line, I had the same diagnosis as you. Mine also spread quickly, and I was also a smoker (now quit).

I am one year, one month and one day past my surgery, and doing well, so don't freak out about the statistics. The best you can do is to do everything to be healthy (including quitting). I used the nicotine inhaler, which worked pretty well.

The surgery is long and involved, but it is totally doable. The recovery is slower than we would all like, but again, doable.

Your PET and biopsy will tell a lot, but do try and get to a cancer centre.

We're here for any questions.