Well I was diagnosed with squamous cell cancer of the tongue after a biopsy 2/24/10. The surgeon told me I am the youngest person he has ever seen with this and that usually people who get it are hard drinkers for years and heavy smokers. I drink socially and smoked less than a pack a day for 10 years, granted, so I realize I contributed to my situation.

I knew I was sick from September 2009 until I went to the Dr. but having started a new job I had to wait quite a while until I had insurance. At this point my bills top about the 60,000.00 range without the bill from the surgeon OR radiation treatments, so it was a good thing that I waited. But i paid for that because perhaps due to waiting, my cancer did spread to my lymph system and is now Stage 3. I will start the first of 30 radiation treatments next week. After some of the things I have read, I am frankly terrified. To date, it has been a struggle to have the biopsy, heal up, learn to eat again, have them hack away at the tumor, only to start the whole dang process over with, and NOW I get to look forward to blisters in my mouth.
I have had a pretty good sense of humor through all of this with no crying or depression. But sometimes I feel a little jealous of folks who have families. I have never married and have no children, so I am pretty much facing this whole rodeo by myself. I am finding myself increasingly isolated and quite lonely, because I really have no one that understands what this is like, although friends are well meaning and loving. Some days its just real hard to do this alone. Then again, Its probably good that no one has to endure all this crap with me either.
I guess at this point I am rambling a bit.... but I am sure you guys understand better than others do. Thanks for reading this.
Lisa from Montana

Lisa,

Sorry that you are joining our little club here but this site will be the best thing that ever happened to you. I guarantee it.

Where exactly did they say your Primary was? How young are you?

You will need someone, we call them Caregivers, to help you so is there ANYONE you can approach?

Are you also getting chemo?

Don't feel isolated or lonely. You can post here 24/7 and someone will respond within minutes usually. Many of us, myself included, will gladly exchange our phone numbers with you so please don't ever let the mental side take control.

Lisa, it is a tough road, but you can do it. We are here for you and this is the best place to be for help. I am a tongue cancer survivor, soft palate and now have tongue cancer again, don't know why I am telling you that, not to scare you, but to let you know I was diagnosed May 10,2002 with Stage IV tongue cancer and two lymph nodes positive for c and here I am almost 8 years later.
Here for you! Carol

Lisa welcome to OCF. We had a young girl here a couple years ago who was only 18 when diagnosed with OC. She completed rads/chemo and is currently doing excellent.

A couple words of wisdom to you. Since you are just beginning everything, eat like crazy while you are able to. During radiation your taste changes and sometimes becomes uncomfotable to eat, so eat now. Dont worry about calories, eat it all

Will you be getting a port and feeding tube? If you are offered those things, its a good idea. A port will make chemo so much easier and you dont need to constantly get stuck for blood tests. The peg tube is for liquid nutrition, its something most people get. Some patients get by without it, but its a rough road. To me it was a life saver, I still lost 65 lbs with having one.

Something else very important, do you have people lined up to help you? If not, right away make a list of every single person who offered to help. Down the road you may need them. You should have drivers lined up. Radiation kicks your butt and makes most so tired that its difficult to drive. Also with taking heavy duty meds, its not a wise idea to be behind the wheel. Even a trip to the pharmacy or grocery store might be too much for you so get those helpers lined up.

I was alone with 2 teenagers the first time I had OC. It was very very diffiuclt for me to get thru it alone. My children were normal teenagers with their focus on themselves. My son who was 17 drove me to rads everyday. You will need help. Call the American Cancer Society, they can help with rides, medicines, even co-pays. I ended up hospitalized several times for malnutrition/dehydration due to not having a caregiver. I was always self sufficient, never needed anyone's help til I got OC.

Best of luck with everything. Please ask questions, we are here to help get you thru this.

If you are an ex smoker and drank a few then you are far from ther youngest person that has had this. It's tough enough for any age for this to happen but it does. Goos luck and do as Christine says, Eat, Eat , Eat and drink a lot of water. Go for putting weight on because you will lose it as we all have.

Welcome Lisa!

We are neighbors of sorts as I'm just west of you in Idaho and really close to Missoula actually.

I'm sorry that you've had to experience this disease but very glad you've found these forums, so you no longer have to feel alone. I'm on the younger side myself however I like to consider myself "middle aged" but still have my boyish charm that used to match my boyish good looks

What I would say, is that it's tough to have a family going through this process. Where I understand what it is to feel lonely and completely alone...having to worry about the emotional and psychological effects this disease has on your loved ones, especially young children is a rough go as well.

Make sure to soak in all of the great advice given here and bask in knowing that there are people here that can relate to you...let it be your strength and support network.

Best Wishes

Eric

Lisa, Ive been thinking of your situation. Please line up some friends to help drive you. Nobody gets thru this alone. I had very limited help and struggled. It was very very difficult getting thru it. Just keeping the meds straight can be a job in itself. Then you need to remember to eat and how much you drank for the day. I dont want to make you afraid, but you will need some assistance. Luckily you have found OCF to help guide you thru.

Amen to Christine for this post. I went it alone and it was miserable but had that thing called pride and stubborness that got me thru so far.

My primary cancer is on the left bottom side of my tongue. Its funny, my speech is returning ok but I can no longer whistle which makes me sad. I guess if there is one good thing that is that I get to go through all of this before summer. I would be very depressed if I was sick in the summer time.

I am currently living with my parents who are supportive. But that was supposed to be a temporary situation- my house is up for sale in another town and I just got my first job after graduate school, and they needed someone to watch their house while they were in Mexico for a month. But its turning into a frighteningly permanent situation of having most of my things in boxes and cramming as much of my life as possible into a tiny bedroom.

So I have a lot of support from my parents but they aren�t a good choice for a lot of this stuff. My brother was killed 5 years ago and my mom is still pretty fragile from that, and now trying to deal with me�� I know she is in a state of panic all the time. It�s a little too close for comfort sometimes, and she isn�t someone that I can have a real conversation with. Its really important to be as good as possible all the time for her�.. always have to have a happy face and cavalier attitude- hence the loneliness. I feel pretty alone.

I wanted a peg tube so bad when they did the first surgery but I had gastric bypass which makes the peg not an option for me. They did a pic line with some nutrients but I don�t know if that will happen again or not. I don�t have to have chemo which is good.

Right now I am hoping that I am going to get through this and be able to work and try to live a little bit, but I really don�t know what to expect.

Thanks you guys for all your input. It really helps to know you are there and that you know what this is like. I am glad I found you

Lisa from Montana

Welcome. Lisa, I also am glad you found this forum. It's been a huge help for me communicating with others who have been down this road. When I first came on here I was afraid I might never be able to enjoy food again as everything tasted like garbage and I wasn't producing enough saliva to get it down. But I soon learned that people went anywhere from a few weeks to well over a year but did start eating again and here I am munching on an (Easter) egg salad sandwich and it tastes pretty good. As you've read this board you've no doubt seen everything from the scariest stuff that can happen to people now living fun and love filled lives years after their battles with cancer. But how ever many years out they are and however much life is going on for them, they still come back to this board to advise and inspire those still dealing with the immediate facts of cancer. Never feel afraid that you might sound like you're whining or negative or any such stuff here. you can whine, rant and rave and folks will always be supportive and caring. Good luck in your battle and come here often for any support and advice you need.

Lisa,

I did radiation no chemo and had no PEG. It was no walk in the park but I made it through all right. I'm 6 months out and eating good with most taste back.

I found this site before treatment so I was mentally prepared for the road I faced. The folks here walked me through treatment and the after treatment issues. You will be facing a tough road but one well traveled. Check in any time and ask any question you need answered. Someone here will have a gem of wisdom for you.

Hi Lisa, & Welcome to your new family!!! You are never alone anymore, you have us all, to talk with, to vent...anything. No questions to dumb or to anything! Ask away! You & I have/had the same SCC, what is on your L I had on the R. The radiation is no picnic! Get some Adavan! The mask is a bit much! I needed the Adavan, to help me stay calm during the radiation treatments! Take the drugs, they help! I hope the staff where you go for your radiation will prove to be supportive & a source of comfort for you also, I loved my "team". Well, you will loose weight, you will feel drained, your tongue & outer neck will be sore. You WILL get through it...one day, one week at a time. There are many drinks (fortified) that you will be able to drink. When the time comes for that, just ask...you will get all the best advice here from this group! (not from me, as I had the peg) I also had a IV daily, before rad. of Amofostine, this is (yet) to help with the saliva glands get working again! Just yesterday I had a gastroscopy done to strech my esophagus, (a side effect from radiation.) Its no big deal! I rather enjoyed my wait on the gurney, reading a magazine! I am able to eat (not everything of course) & just have water with me - always! My point Lisa, please try not to get discouraged, as your mental state has such an impact on your health. Aren't we so glad for all the medical advances available to us today? Go have a big thick hamburger & fries, & a sub & pizza etc...everyday, you are closer to staying cancer free!!! Best Wishes! Dianne

Lisa

Chemo helps the radiation work better. Most patients who get rad, get chemo too. Are you being treated at a cancer center? Do your doctors have alot of experience treating oral cancer patients?

Even with the gastric bypass, you could get whats called a j tube. That goes in right past the stomach and will give you liquid nutrition. Almost all patients who get chemo and rad have the peg tube. I currently have a combo tube called a G-J tube. Patients who only get radiation usually have an easier time of it and dont usually get the peg tube. There is always a temporary tube that goes in your nose if you need one towards the end of treatment. So dont worry there are things out there to help you.

I hope you are able to eat right now after having the stomach surgery. How long ago was that? Being treated with rads can make the weight melt right off which is NOT a good thing. It means you arent getting proper nutrition and that means its going to catch up with you and down the road you wont feel very good. Try to eat what you want right now so you have no regrets or cravings when your sense of taste changes.

Im sorry to hear about your brother and your mom's reaction to the loss. Losing a child is something I couldnt even imagine. Im sure it wasnt easy on you or your father either.

After all this is over you might be able to whistle again. Its funny the little things we notice. I remember the first time I had OC, my cheek was swollen and I lost my dimple. I also could barely smile. I did regain my dimple only to lose it on my third round due to a big surgery. But thats ok, Im doing good so thats whats most important.

Looking on the bright side of things, from here on out you are not alone anymore. You now have 6000+ new friends This site was the best thing I could have found when I was first diagnosed with OC. So many wonderful people from around the world embraced me and guided me thru this. They are still here helping others too! I have met some wonderful people who live in my area from this site. Hope you have some OCF members in your area.

One last thing, please make sure to call the American Cancer Society. They will help you with transportation, prescriptions, etc. They gave me a voucher for $300 to pay my prescription co-pays. The ACS also sent me a couple drivers to take me to rad. I lived 45 minutes away so I was quite surprised that anyone would drive to help me like that. The drivers are all former patients of spouses of cancer patients and are specially trained.

So far, think back to anyone who has offered to help you. Write down their name and phone numbers and start your list. At church or local organizations like vol. fire companies, lions clubs, etc they may also give you assistance.

Hope this helps.