Well, I'm glad I found this forum. It has a great deal of reality and perhaps some hope. Prior to the holidays, I had a neck biopsy for a big lump that only my husband noticed. Unfortunately, the diagnosed this Monday was for squamous cell carcinoma. Since this is Wednesday and I was referred on to a medical team in Denver, I've thus been staged at Tx N3 Mx. From what they tell me the "x" numbers will be filled in after my scope surgery in mid month so it can be further staged, but it is Stage IV at this time. They just need to get the scans and the exploratory done. Since I've already been losing weight, I'll have a PEG tube put in immediately.

Lets just said I'm really REALLY scared.

thanks for being here

Jen

Hi Jen, sad to learn that you are just diagnosed with stage 4 cancer but glad that you have found us in time. What is your primary site of cancer? What keep you from losing weight at this moment when treatment has not yet started? I have lost several lbs too before diagnosis but have stopped losing when I ate a lot prior to treatment because I knew that once I started treatment, I would lose a great deal more.If you need a PEG right now, does it mean you cannot eat by mouth?
Hope you won't mind my being so inquisitive. Just want to offer the right help and don't panic now, a lot of stage 4 cancer patients survive and turn a new leaf after treatment. I am one of them.

Karen.

Jen,

Welcome to this site -- many of us here know how frightening it can be when this kind of diagnosis seems to come out of nowhere. As you go through the next few weeks of doctors' visits and examinations, please ask as many questions as you need to in order to understand what they are finding and recommending. It's best if you can take your husband or another family member to help take notes and also listen -- there's so much to absorb in a short period of time.

I would also second Karen's suggestion that if you can still eat reasonably well by mouth at this point, please try do so for as long as possible.

Feel free to ask questions here as much as you want -- there are plenty of people here whose experiences can be helpful to you as you go through the next several months of treatment.

Cathy

Thanks for your replies. It's Supraglottic meaning I have a primary tumor on my supraglottis. Of course, all this terminology is new to me, but due to online research the doctor confirmed two days ago that I was already at Stage IV due to the huge swelling on my neck. I hate to sound defeatist but it just doesn't sound like I have much positive news to grasp right now. I'm only 43 and have three school aged children. Tomorrow I meet with the radiology department. It seems that treatments, surgeries and appointments are being made for me, without me really understanding what is going on.

BTW, I'm not real good at getting around these boards yet, but I assume they are read by someone. Of course, I'm dealing with alot of quality of life issues right now, being at Stage IV already, I'm questioning whether or not I'm up for the fight and when I can express to my medical team to stop treatment. Unfortunately, I keep trying to find more Stage IV survivors with similar stories, but nothing inspires me.

Honestly, and please forgive me for sounding grim, but I feel like I've just been issued a death sentence and I should gently glide into that good night.

Brainstorker-
Don't you dare give up the fight!!! I was 50, engaged with a 7 year old daughter at home when diagnosed with stage 1V tonsil cancer. That was almost 3 years ago! You can survive the treatment and go on to live a very productive life that will have much more meaning! Hearing that word cancer can put the fear into you, but it doesn't always mean a death sentence. We are there for you!! You need to focus on just getting through day by day one step at a time. And fight! Love - Kris

Hello Jen,

Welcome and sorry You had to find us and really glad that You have. One thing You can be sure of is that we DO know how scared you are at this time. As the saying goes.. "Been there, done that". The posts that You put up are read by a very great number of people, All of whom are pulling for You in ways that are really amazing. Stage IV is only a number. Both Karen and Cathy are long term survivors as am I and quite a few others here. Take "HOPE" and fight with every fibre of your being. You will be able to find an inner strength that You may never knew existed. Sending out positive thoughts and prayers your way.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

Jen...please do not give up before you start the fight,
My husband also was diagnosed as stage IV ,his tumor was 9cm ,pretty big. He found it whilst shaving one night and swears he never felt a thing the night before. You have the strength for this fight , three kids who really need you!
The road ahead won`t be easy but, there is light at the end of the tunnel.
Your absolute terror at the moment is jumping out at me ..I wish I could help to reassure you.
Please keep in touch , if you wish private email any of us , we have all felt as you did at some time.
Take care
Marica

I was diagnosed in April of 2003 with stage IV jaw cancer, I was 41 with four children still living at home. I am 43 now and my life is very, very close to normal. I had major surgery and 7 weeks of radiation treatments. You can do this and you can survive, but you need to make wise decisions now about your treatment. Make sure you are at a comprehensive cancer treatment center that will be up date on all medical procedures available to patients with oral cancer. Keep us posted so we can help you. I also sent you a private email.
Minnie

Jen,
My husband was diagnosed in December of 2002 - the whole thing started with a large mass on his neck, much like yours. His was also stage 4.

Want you to know that now, two years later, he is back skiing on the Colorado slopes (we live in Colorado, too) and back to "active duty" on the fire department.

Treatment is a challenging road to walk - but one you CAN make it down.

Anita

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

Hi Jen,
Please STOP and TAKE a breath. If you don't quit this hyperventilation, no sleep, elevated blood pressure routine you have gotten into, you won't even have to worry about stage IV cancer. You will be dead of a heart attack before your cancer doctors get to treat you. SLOW DOWN. Read this forum. The signatures of most participants contain their diagnosis and treatment and honest we are not all dead, even stage IV patients. Read the resource and treatment sections on the forum to get you informed so you can ask appropriate questions of the drs. Take someone with you to the appts and as my dr says, listen to what he has to say before bombarding him with questions. He has usually answered most of mine before I open my mouth.

I know you are suffering severe pain.I also don't like the fact this tumor is increasing in size. Can they accelerate your appts somehow.

Take care,
Eileen

Hi Jen and welcome to the forum. It wasn't that long ago that I felt just like you. I passed out when they gave me the diagnosis and told me to get my affairs in order. This phase is the worst and it will pass. I have been cancer free now for 2 years. Just became a VP for an international medical device company and life is exceeding my expectations. Cancer is NOT an automatic death sentence. Like Karen, I had chemo and IMRT radiation only and I am back to life not only normal but better than it was before. I have a new perspective that has enriched my life in countless ways. Don't freak out on the stats. Like has been already said - get thee to a comprehensive cancer center and don't short cut your treatment options. It will be a tough year or two but you CAN DO THIS! I also got meds for anxiety and those helped a great deal. Get some sleepers too - you need your strength for the fight. Develop a support network and be willing to allow people to gift you with their help. It's ok to be scared we all were. Read my survivor check in thread for some more positive reinforcement. We are here for you.

Jen, I am very new to this place as well. It was not that long ago my head was spinning out of control. The BAM BAM BAM, quickness and feeling totally out of control is tough. I actually got a phone call two days after being diagnosed saying I had a MRI at 2:15pm...it was already 2:20pm. Needless to say they wondered why I was late, but things happened like that up untill the surgery and then into treatment. It happens very fast and you do feel totally out of control. Keep positive, this just means they are doing everything possible to get you better again. I had 3 stays in the hospital over my chemo and radiation treatments. I kept letting my self get dehydrated. I am on top of that now and only have one radiation left. It is hard at the beginning but remember to ask lots of questions and bring someone with you if possible...4 ears are better than 2. Find support here or wherever you can. It is overwhelming...but it can be done. Take Care and KEEP POSITIVE!!!!

Jen: I am so sorry you are having to deal with this. I'd like to suggest that you might want to ask your doctors for some medication to deal with anxiety attacks. The meds for anxiety/depression have improved tremendously in the last 5 years. As scientists learn more about the brain, they are finding a big relationshp between the mind & the body (surprise!) and our minds can create physical problems. You have a lot on your mind right now and because a cancer diagnosis is so overwhelming, you may need additional help with coping. Good meds can help you cope with the panic/anxiety that you are experiencing. Talk to your doctors and see what they recommend. Also, for physical pain, if you are in pain, say so. Doctors are not mind readers. Finally, it occured to me that your pre-diagnosis symptoms sound a lot like menapause (or perimenapause) so you might want to see your ob-gyn. Just add it to your list of doctor appts! :rolleyes:

Every day with your family is precious and is WORTH the fight. - Candace

Jen
Being diagnosed with cancer is not a death sentence, It can be beaten! I have had all the feelings you are having now, it was an emotional rollercoaster for me and I needed medication to cope at first. It was the toughest ride of my life.
Then I changed my attitude and said, (and with all my kids together) I promised them I was going to beat this. Two years later I

Jen,

There's not a thing you are feeling and mentioning that haven't been experienced by each and every one of us through our journey. Remember, as of the day of your diagnosis...you are a SURVIVOR, until they can prove otherwise.

Just like any other grieving process, there are distinct stages you will go through over and over. With the disease comes the great loss of many things you have learned to take for granted. Also with this disease, you will soon look back on this time and realize more than ever how fortunate you have been and are in life.

Ed

Hi, Jen.
There is nothing I can add to what everyone has told you. You already know what a great resource this site will be - and that everyone here is dedicated to helping you get through the next few months - and beyond.
My husband was diagnosed with Stage IV SCC last summer. I first posted here on Aug. 8, 4 days after his first chemo treatment. I am happy to say that 6 long, hard months later, the doctors have said none of the 55 lymph nodes removed on 12/10 show any signs of viable disease. "Normal" life seems a long way off, but we are focused on Tom's recovery and looking forward to many more years together. YOU WILL GET THROUGH THIS, TOO! Your family will help, and so will we.
Love and sincere prayers,
Nicki

Jen,

I know, it all happens so quick - one day you are a normal healthy woman, and then, all of a sudden you are one of us!! This time last year I had no idea that I would ever get cancer - nobody in my family had had cancer, it just did not happen to us.
But it happened, and I learned that I can survive it. I even had the bizarre experience of having to be glad that I had oral cancer, because in a followup PET scan they found a kidney cancer that would have grown untreatable without any symptoms. Now I am recovering from a kidney operation, too, in addition to the after effects of radiation last May and June.

And life is good, and worth a big fight!!! I remember the radiation oncologist asking me if I was a strong person, because the radiation treatment would be rough. I felt like asking him, why, do I have a choice? You don't have a choice, you have to fight with all your energy, and your husband's and family's energy, too. And you will find out that you can do it, one little thing at the time. Give yourself permission to put everything you have into getting better, dont let yourself worry about unimportant things like laundry and dust and what you look like.
On the other hand, doing what you can to keep things going smoothly and comfortably, especially for the children, will keep you feeling better.

I ramble again, never mind.

Good luck, remember that everybody on this forum is pulling for you!

Leena

Jen

Just wanted to add my 2 cents, you have a fight on your hands, but remember you can do it. I was stage IV had surgery, chemo, and rad.in 2001
I'm coming up on 4 years. Set your mind to the fight and try not to lose the light at the end of the tunnel. I will be praying for you, hang in there!

Jen,
I'm thinking of you and praying for you. I am awaiting my biopsy results as I write this. I'm so frightened but no matter what I know I will fight; let's fight together!
Sending you love and strength across the miles.
MicheleT