My display name, screen name and real name are all the same, so there's no confusion.

I am very new to this. All kinds of cancer runs in my family, so I've been waiting for my turn. It's finally here.

I'm not sure what to write because my mind spins faster than my fingers can type and I get to the point where I'm so overwhelmed that I don't feel like talking. Not sure if that makes sense or not, but it's how it is.

I've always had a harsh voice for a woman and never thought anything of it. I'd sing one song in church and my voice would break. Again thought nothing. For the past year I've had a sore throat with a shooting pain that goes up through my ear everyday. I pushed myself cause i'm not the doctoring type of person. I smoke like a chimney too.

Anyway. I finally went to my Dr. and told her my throat burned when I drank orange juice, so she sent me to a specialist who rammed a hose up my nose and set a date to do a biopsy. It came back cancer, so he sends me to a group of specialists this past wednesday.

They felt up my neck, went out and talked amongst themselves. Came back in and ran this long hose up my nose and down my throat. Gaged me a few times with it and told me to go eat something light and come back in a half hour while they all talk things over.

I went had soup and coffee...came back and met 3 more drs. They rammed that hose up my nose again while 6 doctors watched and commented and left the room. I almost decked the one with the hose

One dr came back and said he wants to do a PET Scan. He wants me to do in house treatment there for 6 weeks because of how extensive the treatment will be and possible side effects.

He told me I won't be capable of taking care of dad, so told me to forget it. My life will change.

All I know is i'm tired..I did ask about non-treatment and he said if I did nothing, it would grow and I would choke to death

treatment...would be 6 weeks, everyday with radiation, but he's not sure until he gets results of PET Scan how much Chemo.

This is what the diagnoses is...

Squamous cell carcinoma of the supraglottis with cervical neck metastasis, stage IV disease, with a T3, N2, MX

I have no clue what it means or how bad it is. I feel lost and am driving myself crazy looking everything up that I don't understand.

Now if you remember, I said I didn't feel like talking? This was written over time and I copied and pasted LOL...not bad huh?

Looking forward to getting to know ya all.

Ann Marie 2007 (I noticed another lady with the same name, so I added 2007)

Hello Anne Marie. I just want to welcome you the the forum. I had the same question about my diagnosis when I came here. I didn't understand the letters and numbers. One of the members gabe me a link to go to that explained it very well. I am very sorry that I can't find or remember that link but I know that someone who does will reply to you soon. There is a wealth of info here and pretty much all of it is from first hand experience. I am 1.5 weeks post treatment. You can do this. You said your family has a history so I assume you may have an understanding of what you are getting ready to face. We will be with you on this journey. You will be in my prayers and thoughts. I figure the only time it will suck to be me is the day I lose the ability to fight this old disease. Till then, the family and friends I have makes it impossible for me to say it sucks to be me. I do agree that it sucks to have cancer, but having it showed me just how great it actually is to be me. :-)

I'm not looking forward to this. In fact, I was seriously thinking about not doing anything and letting it run it's course.

I don't know if I'll make it through the chemo. I'm trying to think positive, but not sure if that will hold up.

Thanks for the welcome

Dear Ann Marie - I'm so glad you found this site. There are so many wonderful compassionate and knowledgeable people here and I know you will get lots of support. Sounds like you have been through so much! With the several doctors that you've seen, who consult with each other I'm guessing you must be with a Comprehensive Cancer Center which is a good place to be. I'm a caregiver to my son who had Squamous cell cancer of the tongue but I'm sure there are others here who can help with some experience closer to your own. It is definitely a crazy maker when you first get hit with the awful news and when you are still waiting for results or deciding exactly what is going to happen. I love your comment about decking the rubber hose doctor! Sounds like you are a tough lady and you've already started to fight this cancer beast just by looking up stuff and coming to this site. Hang in there and keep in touch. Everyone here is ready to support you through this.

Annette
(will keep signing off this way so we tell us apart)

Hello Ann Marie.
When I started writing, no one had responded to you. When I went to send it, I think Ann-Marie
and Lee33 were sending theirs and mine got lost.
But they covered all bases except one.
Your colorful comment in your signature is incorrect, it should be ...Sucks To Be Here...
Good Luck, PeteyB

Thx for the welcome

I'm gonna post to this tomorrow. I'm tired and i'm usually in bed by 9PM.

Pete? Naw...it doesn't suck to be here...it sucks to be me

BTW...This is all an April fools joke, right?

Ann Marie - The link that Lee mentioned could be this one:
http://www.oralcancerfoundation.org/facts/stages_cancer.htm

Annette

Hi Anne Marie,

If you are like me, the early going was the most fearful and the most difficult. My imagination went wild with all the worst thoughts and feelings of pity for myself and my family.

As I learned more about the disease, and you need to keep asking your doctors everything you can think of (now and throughout treatment), the fear began to subside. In my case, my wife was my caregiver and attended each and every doctors visit - she helped a lot in the question department.

Once I got into the routine of the treatment, my emotions came under much more control and I found a lot more strength than I ever gave my self credit for (with a lot of help from my wife - I didn't discovered this forum until after treatment).

I do not have the same form of SCC that you do, but you are not alone - many here have experience with common elements that will be in your treatment plan, and you will find support and knowledge to help you through.

Best wishes,

Chris

Anne Marie,

Get use to that hose up the nose thing, we all get it and many many times but you will get use to it. I even look forward to it compared to other things they have done to me!!!.

You CAN"T let it run it's course because that means almost sure death and we've been told not a pleasant one either. There are no mircles around the corner and we all have endured the Tx and are here to tell you it's ruff stuff but 7 months out and I am thankful that medical science has at least progressed this far in the Tx of this deadly desease.

So join us and become a winning percentage. Each of us helps the next person and eventually we all will enable science to beat this and all cancers.

I am just so scared to go through this. I've never been this afraid before. I am the main caregiver of my 82 yr.old father and a daughter who's 14.

I show an appearance of being up beat to everyone, but am scared to death. I've briefly talked to my dad and daughter about this, but they and my sister and brother have no idea how this is effecting me emotionally.

My daughter is not my biological daughter. I'm in the process of adopting her. had her sense she was 9. I've told her to ask any questions she'd like and if she doesn't feel free to talk to me, she needs to talk to someone or go to the school counsellor. She loves going to church and such a good kid.

Ann Marie,

Soi sorry you are here. I don't have anything to say except you and your daughter are in my prayers. The treatment is tough but you can do it.

Tim

Ann Marie 2007,

Hi, I live in Yardley, Bucks County and am curious where you live and where you went for your diagnosis.

Depending on your answer, it might be a good idea if you got a second opinion. Not that there might be a different diagnosis, but that you might be able to get options for treatment plans as well as better explanations as to what is going on and a more compassionate team to treat you.

You can contact me by email by clicking on the envelope with one person standing next to it, to the right of the date and time.

Jerry

Thank you all again.

I've read alot today and am totally exhausted mentally. I feel so pathetic right now. I've always been a tuff cookie.

Hell, I made it through 2 divorces. I have no one to stand by me through this. I have family, but we were never close.

My 2nd ex has remarried and we all get along. He wants to be my support system but I don't feel comfortable with that seeing he is remarried. Been divorced 7 yrs., but remained friends. Made a better friend than a husband

I fear the bonding that may take place because of me being so vulnerable right now.

I have always held a special place in my heart for him, still love him when I divorced him, but had to. Too many affairs.

I haven't felt this pathetic in years. Really am sorry about the whinning...this is not my norm. If my friends could see me know, they'd never believe it was me talking.

[quote=wilckdds]

Ann Marie 2007,

Hi, I live in Yardley, Bucks County and am curious where you live and where you went for your diagnosis.

Depending on your answer, it might be a good idea if you got a second opinion. Not that there might be a different diagnosis, but that you might be able to get options for treatment plans as well as better explanations as to what is going on and a more compassionate team to treat you.

You can contact me by email by clicking on the envelope with one person standing next to it, to the right of the date and time.

Jerry[/quote]

Hi Jerry,

I'm in the Northeastern part of Pa. 25 miles west of Scranton.

I went to Geisinger Medical Center, Danville, Pa.

I wouldn't even know where to go for a second opinion. Guess i'm just freaking out.

Ann Marie....PLEASE do not apologize for what you are calling "whining." Isn't it wonderful to have a safe place where you can express your deepest fears?? And believe me, you may or may not ever meet one of us face to face, but that does NOT mean that we don't care deeply about each person who is a member of this forum.

There was a time when EACH of us was in your shoes, as a newly-diagnosed cancer victim, and scared witless. Most of us were not fortunate enough to discover this wonderful, caring, informative site until later in our treatments, but at some point in each of our journeys, we each have found that we have something to offer to others, and that in itself is strengthening to us.

Please let us minister to you now....sorta like allowing each of us to "pay it forward." Believe me, before you know it, you'll have progressed along the journey, and one day you will be the one writing to support another person who is scared to their core.

We know how you feel. And we know that you are not whining. You are telling the truth, and we have all shared that same truth at one time or another. It's part of the history for each of us, and it is something that most of us live with to some degree every day.

So....say anything you wish. Nobody is going to think less of you, and NObody will think you are whining. Keep talking to us from the heart. It's good for you....and for us too.

My heart goes out to you. Once you make some progress with getting your opinions and having a plan, you will feel much better. It will be difficult, but you CAN do it, and you will probably be surprised by how others step up to the plate to support you.

Stay in touch!!!

Ann Marie 2007,

You have already said all that you need to in order to move forward with the prescribed drill as instructed, a 9 year old soon to be daughter. Really, do you need any further encouragement?

Ann Marie,

Pardon the mistake in my last. I meant to say 14 year old daughter.

Bill D.

Dear AM 2007, You really do have alot to fight for-especially that 14 yr. old!! If your ex really is in postition to be part of your support system- then agree to it-- let him know that he needs to get on this site and be an active part of what is going on. Guess this will boil down to "Just how tough are you?" I've got my fingers crossed for you. Amy in the Oz

August...

Thank you so much for you lovely post. I cried through the whole thing. I had to re-read it again. Thank God my daughter is at church and my dad's eating.

The nurse is now here to shower my dad so i have a moment to go to my room and have a desent cry.

I will be posting and I do know what you mean by you all being like family. I have another place that i've been a part of for 8 yrs to help newbies. Over there allot of us have met one another. We setup gatherings. In fact, one of the girls found this site for me.

Ann Marie,

You're not far from Manhattan. You may want to go there for an opinion. My experience has been at Beth Israel. The group that I saw only treats folks like us. They are both compassionate and talented. Hang in there. Life will get better, I promise.

Rob J.

Anne-Marie 07

Welcome to the group no one wants to "have to be a part of" with the most compassionate people you will ever meet. Colleen said it right ..this is a safe place. You can do this. I am fairly new to all this too and I am a young mom of 5..you can do this and your daughter ..she will be amazing through all this , they surprise you and you will find strength in each other. I know it sounds crazy and my kids were one of my biggest fears......they can do this and so can you .....my motto " One day at a time and some days one moment at a time and all things are possible " In the begging it is all so overwhelming and your mind races and you think the worst and you dont know where to begin or remember things and it just all so much ,,,Take a breathe ..we are all here , really we are. Life will change and it wont be easy , but worth it in the end when you can say you did it and you are cancer free ! I say you cant help the hand you are dealt ....but you can play the cards. So my hugs and thoughts go out to you are your family. Also you need all the support you can get and if you and the ex are friends and he wants to be there.... maybe you should let him, just make it clear that that is what you need support and a friend! Agian you always have us ! I know you can email me anytime..my cancer was of the tongue so I dont know your treatment, but I know your fears.

Sharlee

Ann-Marie 07 - Children can be an amazing source of support. It's good for them to feel that they are a part of being able to help and be a part of your recovery. I would not reject the idea of allowing your ex-husband to be of help to you either. You said yourself that you didn't stop loving him when you divorced and I'm sure he still has feeling for you even though he re-married. When my ex and I divorced, we remained friends and when he remarried, we all got along well. Your ex probably needs to feel he can do something to help you through this (maybe his wife can help, too so she doesn't feel excluded). Don't worry about the "whining". It is NOT whining. You are at a vulnerable point and it's ok to have some compassion for yourself! So accept whatever help is offered. It will help you get past the difficult days so that you can be stronger and able to fight the cancer beast. Stay in touch with us and let us know your feelings and what's happening.

Hi again Anne Marie 2007. 4.5 years ago I had to make a life change and at that time I felt like I was totally alone as well. That was all of my making though. That was my first experience with asking others for help. I had always been to proud to ask. Plus I figured it was a sign of weakness. They told me about this concept that I must surrender to win. With alot of effort, prayer and humility I became teachable. This concept of surrendering, allowing others, and for me a God, to help me my life and perception of life changed. I set out on a journey that I never expected. My life turned around and I wasn't alone anymore. I found that what made me feel alone was me. I learned how to be content with my own company. What I want to share with you is this, for 15 years due to loneliness I wasted alot of time in addiction. In July of 2002 that all changed. In March of 2005 I was diagnosed with MS. My wife was pregnant and I got scared, but I never felt alone. In December of 2006 I recieved my diagnosis of cancer. And I really never felt alone because the last 4.5 years taught me to accept others offers for help. I quit putting unrealistic expectations on myself and I also quit denying my family and friends the right to share there gifts of hope and action. Through all of this I have not had to return to any old coping skills and I have been extremely grateful for the number of family friends and strangers that have and continue to help me and my family. I asked them what the difference between the old days and now is and the said I didn't isolate myself anymore and that made it possible for them to do what they always wanted to do and that is share with me the way family does. As long as I'm a parent I am responsible for fighting for my life because I never want my little boy too feel like I ever felt like he alone wasn't enough to go through hell and back for. This is what keeps me humble and gives me the strength to persavere. Prayer has given me all I have needed and it has been humbling as well to know how many people took the time to pray for me and my family. That is why I said before that I could never say it sucks to be me because these challenges I have had to face allowed me to become a part of life. I thank my friends here on this forum and we will be here for you. This is tough but you can do this. And I'm sorry but I know you are not alone and if you have been blessed to be a parent for 5 years now and you are adopting this child it can't suck to be you. We'll do our best to help you navigate this difficult path but you have to put one foot in front of the other. You are not alone. Lee

I have to thank you all in groups because I am limited on time. Some days I have more time. What I did the other day was sign in and stay logged in, but wasn't at my puter all the time, so forgive me if I don't get back to you right away.

As far as the cancer goes...I started having a sore throat about a year and a half ago on the right side. after a while it felt like a shooting pain right through my right ear everytime I swollowed.A few months back I got tired of the pain in my throat and ear. I finqally went to my doctor and told her it hurt and when I drank orange juice it burned. She set me up with a specialist and he too the biopsy. The rest I already explained. So that's my story.

I got a call this morning to go for my P.E.T. Scan thurdays @ 1PM. I spoke to my ex(Bob) and his wife (Wendy) and they are both ok with it. I sent them this site for support.

I'm still scared, but seem to be settling down about it. Looks like this may be a roller coaster ride.

Not sure who gave me the site for the letters, but thank you. It did help to understand and not wonder.

I also called my doctor and asked her if there was another med I could take along with the Chantix to help me stop smoking. I'm 18 days in and still smoking. She called in Nicaderm, so I'll be starting the patch tonight. Hope this works. Been smoking sence I was 9 and i'm now 52.

Hi again. I got my diagnosis on 12-29-06 and smoked up till the 10th of Jan. I took the Chantix as well. My wife kept giving me a hard way to go. Little comments like "Well, I quit when I got pregnant." She remained smoke free but asked me for a smoke a million times. Anyway I ws really struggling with it, and the Chantix didn't seem to be helping at all. On January 12th I came home, went to my garage, pulled out my smokes and my diet cokes and intended on smoking 2 cigarettes and saying goodbye to my old friend. I smoked the first one and honestly knew then I was done. It was my chioce not the cancer's, my wifes, or the government's choice. Mine. I talked to the remaining smokes left in the pack like they were alive. I thanked them for all the good times in the past . Especially the mornings that we would go out and watch the sun rise and get my head on straight for the day as well as the many times they helped me relax after someone or something really aggrivated me. I told my smokes that although I did not believe that they caused my cancer, I had to recognize at this point that they would probably do quite a bit of harm. I didn't want to be that slefish to my little boy so That was the last time I smoked.

I used snuff as well. I have had no desire to do either since that day. At first I figured I would stop once the treatment started anyway because of all the side effects. The surgeries prior to me quitting slowed me down some but still did not make me quit.It's really tough but you can do. I think what helped me the most was making it my choice. I told all of my doc to stop giving me the smoking speech until they could explain how non-smokers were getting oral and lung cancers. That took some stress out of my dr.s visits as well. That helped to, removing all the stress that I could. Good luck with the patches and the Chantix. THey told me it may take the full 3 months for the Chantix to work. Like I said I never noticed it doing what they said it should do so I finished up the first months supply just in case, and didn't by anymore.

Hang in there. Remember, don't put to much on yourself. Take it one day at a time and do your very best each day. I really believe you will be suprised at the progress you make with everything. I believe in you and admire your courage. :-) Lee

Hi Ann Marie 2007- It sure is a roller-coaster ride, but the good thing about it is that when it's down, you know it's bound to go up as well and you just have to hold on thru the bumps. I've been so interested in the recent posts with the quit smoking ideas. I have an older son whose been smoking since he was 14 and worry about him a lot. I came across a link with some good tips about quitting but the part that got to me was advice to non-smokers (me) about how not to nag the person and make it worse. They suggest that if you bring up the subject more than 3 times a year, then it's "nagging". It's here in case anyone wants to check it out: http://www.anti-smoking.org/quitting.htm I've been reading everything I could on this site re quitting so I can be reading for my "non-nagging" conversation with my smoker son.

Sorry I didn't get back to you sooner, but I was away yesterday.

You could go to NYC as suggested above or to Fox Chase in Phila., where I went.

Any Comprehensive Cancer Center (CCC) would be a good idea.

Jerry

Should I get a second opinion? 2 people have already suggested it.

Why can't they just operate on it and take it out?

Why does there have to be chemo and radiation involved?

The lymph nodes didn't start swelling til the 2 CT scans were done with the dye injection. Now the PET scan thursday will shoot more dye into my veins and they'll get bigger.

For some odd reason, yesterday the pain in my ear went away when I swallow. However, I feel pressure in the back of my throat now. Should I see a doctor or wait til thursday when I go for the PET Scan?

I just got a call from Danville. They changed the PET scan to Monday so that I can also see the doctor at the same time.

AM 007,

Some operate to remove the nodes first and some do the concurrent chemorad first but the current Tx modality says that rad is the real killer of the cancer and chemo helps the rad do it's killing job better. This disease is very agressive and all docs prefer to hit you with the kitchen sink up front than hold anything back. If you have been told your a Stage IV and remember there is no worse Stage you need to listen to their Tx approach. I'm sure if you get a 2nd or 3rd or 4th opinion it won't be surgery only. It may be chemorad first and lets see but forget the surgery only idea. Your life is at stake so don't mess around too long. Get another opinion quick to make yourself more comfortable and get started killing the disease that's killing you.

Anne Marie 07

I just wanted to say that we are all waiting anxiously with you and I am happy you have changed from life sux to "And life goes on ..." Cuz that my friend it does !!!!

Sharlee

Yeah...when the dr called today I hit him with alot of questions and he said pretty much what you said.

He changed the PET Scan from thursday to Monday so that he could see me right after and we can talk at length.

I told him I didn't think I could mentally handle this and he said I can. Guess he's heard this many times. I'm still scare to death about what i'm going to have to go through and am still trying to find a way out.

Yeah..I figured I'd change my signature

Hey Lee. Excellent advice. I don't even know you but I'm proud of you. It's amazing how powerful love can be. Especially when a youngster is involved. I would have never dreamed that I'd be free from the chemicals. I've been nicotineless for a month now, after twenty years of continuous use. Anne Marie 07, if I can do it, you can do it. Personally, I'm using the people on this forum, especially you Lee, prayer and the love of my children to quit and so far its working. I guess my point is don't try to do it by yourself. Find strength from whatever you need. Be it God, that little girl, anything. Stay with this forum. You'll find these people are truly blessed and willing to help all that come. Lee, holler at me the next time you're in E. TN maybe we can take our boys fishing 865-435-5305.

Kit

Anne Marie 2007, I'm just so happy to see the new signature. Kit I'll keep that in mind the next time I make a trip that way.

Anne Marie 2007 we just give each other hope from day to day and some day I may need you to help me see past my fears. That's what all of us do is share hope and that makes cancer survivors out of us. I'll be looking for your posts in currently in treatment. Good Luck. Lee

I went all the way down Monday, sat in the waiting room and they came out to tell me the machine broke down.

I have to go for the PET Scan tomorrow and a CT of my neck. I think they said something about a mask.

Naw guys, I ain't gonna make it through this. I'm a friggen wreck. I'm still smoking and am so depressed I can't think straight. I've become a walking bitch too.

Yeah..i'm taking one day at a time cause I can't handle anymore but my mind strays. I've even been too depressed to post.

Anne-Marie, you've got some "not so simple " choices to make here. You are 52 yrs. old [if you are being honest] and you could have alot of good life ahead of you. You've got a formidable disease to fight, which will take alot of guts, strength and courage. Or you can just quit. So please make a list of why it might be good to be on the "top side of the grass" rather than under it- you should get help with this part if your depression has taken total control of your thought processes-
You can Fight to survive or quit and say "so long"

You have a Medical team who is prepared to fight for you and there is a Superbowl sized football stadiun full of people here who will support you if you choose to fight . Should you choose the alternative, some of us can help you with that part also. Amy in the Ozarks

JAM...thank you for the imput and I just read your signature. I'm so sorry for your loss

AM2007, You sign your post"And Life Goes On"? Then you need to live it. As Amy said you have more support here than you could imagine. Put the smokes down and find someone to help you. I walked away from a pack a day for 35 years when I was diagnosed back in October 06. This will not be easy by no means but it beats the alternative.

Ann Marie 07


Every time you think of giving up ..just look at that beautiful daughter of yours....If you dont beleive you yourself are worth fighting for I am sure you beleive she is ! ANd you do have more support then you can ever imagine here! No one says it is going to be easy or a walk in the park..but anything worth havin ( LIFE) is sure worth fighting for ...All the "free" things in life ( death) aren't that great !