Jen,

I am truly sorry for your recent diagnosis. First, welcome to the club nobody wants to join and as you can tell, you are warmly welcome to come to the neighborhood. Yes, we have been there and done that as Jack says. Having been recently diagnosed, your head is spinning right now. I want you to know that staging has some correlation to survival rates but for now, do not even think about that part of this disease. Many of our friends that are no longer with us were Stage I and many of us still living life to the fullest were Stage IV. You have let your mind wander to the "numbers" side of it and now be done with that.

As you know, your life as you know it will never be the same. Does this mean it will be worse? ABSOLUTELY NOT!! You will make it through this part of the disease, your life will settle into a routine and many things you used to take for granted and things that used to bother you will take on a new light. The little things that were overlooked will take on new meaning; the smile of a child, the hug of a loved one, a precious memory, and on and on. The little things that used to get on your nerves will soon diminish into obscurity.

Sit down with your family tonight. Look each one in the eye and tell them how much you love them. Hold them tight and feel the love. This is what will get you through this. Give them every possible chance to spend every second with you from this moment forward. None of us or any human being, for that matter, has a guarantee of what tomorrow will bring or if there will be a tomorrow. We all have NOW. Your family needs you just like you need them. No matter how much love we have, there is still capacity left to love more. Live each day finding ways to let more love into your heart.

YOU CAN DO THIS!

Ed

Jen,

With 3 school aged children, you have a lot to live for and a lot of living to do. I hope you can gather strength from the survivor stories on this website... I know I did.

I got a Stage IV dx 26 months ago and I'm here to tell the tale. Whatever happens down the road will happen. Today, I am able to enjoy food, exercise, and the company of family and friends.

You are walking down a hard road. Some of us have been there already, others are walking right beside you. We will do our best to answer your questions and cheer you along the way.

Ed is right, you CAN do this!

Ken

Dear Jen

It is so tough to be given a Stage IV diagnosis and I understand how you are feeling. I also had a neck lump as the first indication of a problem but, like others, I am now 2yrs from diagnosis and getting on with life.

Joining this forum is a great way for you to express your feelings and to come to acceptance of the situation. You will find so much support and helpful advice here. As Ken says, others are walking beside you to help you on your journey.

Sound like you have excellent medical support and a loving family who will help you.

You are in my thoughts, love and light from Helen

Jen, welcome. Sorry you need us. Please keep a positive attitude. I, too, was a stage IV cancer victim and have beaten it. I also found my tumor by finding a lump in my neck. Make sure you are in a major comprehensive cancer center to insure the most up-to-date treatment possible. And yes, they will make appointments for you before you understand the reasoning for them because they know what treatments you need and who to see. It sounds like you might have a fairly large tumor like lots of others have had on this board and defeated this disease none the less. So keep at it, you can beat this thing as well. A positive attitude is a big part of a successful treatment regimen, so keep it positive and don't let this get the upper hand. We've all been there ourselves or been there with our loved ones and you can win this too. Many prayers coming your way. The Lord will walk this walk with you.

Hello Jen; Life for you has just taken a sharp turn for sure..but please know that this path to recovery is well worn and it is also washed with a lot of tears. There will be many days that you will dig deep for the grit to continue, but the fight of a Mom to continue her "job" is something strong to be reckoned with. Love and support will flow to you from those around you and never be afraid to ask for a little extra if you need it.
I am a praying kind of person, so you will be on my list as you face this special challenge.
God Bless
Fran

I want to thank each and every one of you for at least shedding a positive glimpse. Most of my problem is, outside of your messages, I haven't found too many survivor stories for stage 4. Hell, I don't even know what lies ahead for me yet and how on earth I'm going to be able to cope.

I don't want to be lengthy here, but need to just let some of this stuff escape out of my head to people who have been through this to offer me some suggestions. A month ago, if you would have told me that I had Stage IV Cancer, I would have thought it CRAZY. Man, I was excersizing, eating healthy, and although I hadn't quit my filthy habit of ciggies, I had really cut back and limited myself to moderation. Never was much of a drinker.

It wasn't me that noticed the lump on my neck, but my husband did when I was bending over scrubbing the tub. The next day when I went into the Urgent Care clinic, I thought what I had was simply an infection. Three hours later they had imaged me, xrayed me and took blood. Then they told me to see a specialist a week later. He did the FNA in two spots on my neck and scoped me through the nose. I mentioned that for the past couple months I had really high anxiety. REALLY hish. Night sweats, heart palps, insomnia. Then he assigned me a primary care doc for those needs. (that's a whole different story) Basically I had to get through a Christmas from hell.. catching a flight to Sun City AZ at 4 am with all five of us for four days and four nights in an uncomfortable place with relatives that didn't make me comfortable. Enough to make your skin crawl. Either due to the disease or the stress, I began throwing up and slept about 3 hours a night on a poor quality mattress. If you saw anything on the news about airplane travel, my little family experienced it all... lost baggage, flight delays and wondering how we were ever going to get home. January 3rd, my husband accompanied me to the appointment where he pretty much just told me I had cancer and sent me on to a specialist. He did give me a nonrefillable prescript for pain. The pain in my head has gotten rather intense. What started out as a small lump has tripled in size over the past two weeks. Two days ago, the specialist at University of Colorado gave me the TxN3Mx diagnosis and explained what the numbers meant.. and told me it was stage IV.

Tomorrow I have to see a radiologist. It's like BAM BAM BAM. I'm on a runaway train and someone else is laying the tracks. January 18th is the exploratory surgery to fill in the rest of the numbers of my diagnosis. They knock me out for two hours and scope me to see if it has metasasized and put in the feeding tube. I've heard so much bad news lately, I just don't expect any good news to come of it. After having spent thousands of dollars on dental care last year, the thought of losing my teeth is a fright. I keep asking myself where exactly do I draw the line?

Before I start sounding like a whiney baby, I want you all to know how truly grateful I am that this board is here. The other websites are so laden with medical language I can't interpret them.

I admire each and every one of you that managed to beat the odds. Part of me harbors some sort of guilt in this diagnosis for having been a smoker. Hindsight is always 20/20 but man it sucks to have to pay this high of a price. I keep apologizing to my spouse for being sick. I also count my blessings that he's here for me. The extreme guilt eats me up too, but there's nothing that can be done about it.

Oral Cancer doesn't have nearly the forums or websites devoted to information and message board support that some of the more "popular" cancers have. Doesn't that sound strange? I'm actually kicking myself for not acquiring a more politically correct cancer.

I'll go now. Thanks be to all of you.

Jen

Jen, if you knew Brian you know he's not into "politically correct" anything. Thus the OCF orgainization, one of the few places those of us with oral cancer can turn to for help and information. Welcome, and feel free to ask questions, rant, whine, complain and anything else. We've all been there and understand and encourage it. Part of the process.

At this point it does no good to beat yourself up for being a smoker, seems about half of us (not me) were non smokers or would be considered low risk and still wound up with this awful disease.

The runaway train feeling is pretty common at first, unfortunatly that's the time when you need to more time to digest what's going on, but things move too fast for that. We have another saying here, "cancer is just a word, not a sentence" Sure, things will change, but many of us have probably become better persons for surviving the experience.

A lot of things going through your mind right now is natural, and you've just gone through a time of year that's stressful even without having to deal with a this problem.

I had partial glossectomy and 2 neck dissections, did the chemo/rad deal twice. Stats weren't good for me, but here I am, 18 months out from ending the second round of rad and doing well. Take a minute to stop, take a deep breath, and determine that you are going to kick this diseases butt, and not let it kick yours, and you'll be able to get through it.

Hopeing for the best for you, just know our prayers are with you.

Bob

Jen, you are wrong in saying there are not many stage 4 survivors stories available. Just read through people's replies to you and you will find there are more survivors of stage 4 than other stages here giving you support. I agree that oral cancer is not so 'popular' and there may not be too much information about it. But if you have searched forums of other types of cancer, I think you may not find one that is so informative and supportive as the OCF. You should consider yourself 'lucky' that you have found this forum so early as a support to you throughout your battle. I felt so lonely and desperate when I was having my treatment and eventally I got severely depressed. It was only when my depression was over that I came across this forum by chance. Don't ask why you are chosen to fight this devil. If you feel yourself wrongly chosen, how about me? I don't even smoke or drink in my entire life. Focus on what to do next rather than why you are here. Stay positive and post any question and I am sure you will get full support.

Karen.

You know, I keep trying to figure out ways to BE positive. With three kids still not raised, I dare not let them see me with the ol' deer caught in the headlights look. As I told my little girl tonight, she was getting teary on me again, that I've got so many things to be grateful for. She must remember the good things and the funny weird things about her momma. Yes, I'm sick, but there are millions out there far worse off than I am.

Not to be political or stir up notions of which side I'm on, but at 43 I've had it pretty darn good. I feel even worse for our young servicement over in Iraq coming back to live with the kinds of wounds they have. Even mentally I have it better. I'm not having to deal with very REAL shell shock.

I'm a very strange person...I think weird stuff all the time... lol.. hope I can stick around awhile.,

Hi Jen, Sorry to hear of your diagnosis. I was diagnosed at age 44 with Stage IV tongue cancer in May 2002. I am still here, telling my story. Think positive and Keep Looking Up!!! God Bless You! Carol