New to this

Just found out Friday 10/18/2013 my biopsy came back as positive for Advanced Squamous Cell Carcinoma - I go to the Dr. for th first time on the 22nd - I am afraid, I have been reading the posts on this site, I want to beat this, I am going to continue to write on here about what happens, is that alright, just writing this seems to help somehow, I have been reading the survivor times on How Long have you survived and I want to keep reading them over and over.  I want to survive. I want to live.

Steve5

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Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    you will be fine

    Steve,

    Welcome to the H&N forum, we have each stood in  your shoes and it can be overwhelmingly scary.

    Next your team will develop a treatment plan and present you with what they know.  Depending on where your SCC is located the treatment often selected by H&N  members is usually 4 choices, i.e. surgery, radiation, chemo or wait (and watch) and see or some combination..

    It seems daunting, but you will quickly select the best choice(s), with their help, for you.

    Treatment can be tough, but from my perspective very doable and believe me I was as trustingly blinded, and frightened by the treatment plan as anyone.

    I also was determined to give it my best shot and paid close attention to information that I could use to help myself manage the side effects.

    Jumping over the treatment plan for a moment, you will come out the other side and without cancer.  That is another common goal of the H&N forum.

    Relax and good luck,

    Matt

  • j4mie
    j4mie Member Posts: 218
    Hi Steve...

    So sorry you are here, but welcome to the family Smile My husband was diagnosed in Aug. 2013 and is currently in the midst of treatment. Your post really hit home, as I can vividly remember the feelings that you describe happening in our home only a couple of months ago. It is the most scary thing that had ever happened to him, me and our family up to that point. However, you will get through it...you have definitely come to the right place. I have found that no matter the time of day, I have found people (very quickly becoming an 'extended online family') who have been in our shoes that have been willing to lend an ear, a suggestion, or a ray of hope. So, write and ask plenty of questions.

    On a quick note, in our short experience so far, the hardest part was waiting to start the treatment. Once you have a game plan, and start your 'fight' it is a huge relief. Hang in there!

    Jamie

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Hi Steve

    sorry you had to join, but this is a very helpful club.  First take a deep breath.  This will be a marathon, not a sprint.  We were all overwhelmed at the start, but if you will take it one step at a time, it is pretty doable.  First a word about all the emotionally charged buzzwords.  Forget stuff like "advanced" squamous cell carcinoma.  That just makes you think there isn't a chance in the world, doesn't it?  Actually,. the word advanced doesn't have any meaning when put in front of SCC.  You have ordinary garden variety scc, just like everyone else.  See the doctor,  make a plan.  There is plenty of time to fill in all the details.

     

    best to you

     

    Pat

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    steve, i'm sorry u need 2 b

    steve, i'm sorry u need 2 b here but very glad u found us!  ur attitude 2 live will get u thru tx.  it is a hard road but one we've traveled and come thru the other side.  for now eat everything u can and try to gain weight.  u will be losing wt so whatever u gain is a plus.  also, drink lots and lots of water during tx.  that is extremely important.  it will get rough and there may be days u think u won't make it but that passes and then u c the lite at the end of the tunnel.  we will all b here rooting and cheering for u.  keep us posted on your progress.  you will live!!

    God bless you,

    dj

  • phrannie51
    phrannie51 Member Posts: 4,716
    Welcome Steve....

    to the club nobody wants to join.....you have happened upon the best Head and Neck group on the internet....truly, we will open our arms, take you under our wings and help you get through this bump in the road.  One of the advantages of having this big of a family, is there is always so many ideas.....you can try one, if it doesn't work, then there are 10 or 20 more ideas waiting in the wings....

    This is a scary time....but as Jamie said, waiting to get things started can be the worst.  Longtermsurvivor was right on when he said this is not a sprint, and taking things one step at a time is the way to get through this.  I know when I was first diagnosed, I felt like I'd been parachuted into a foreign country where I didn't know the language or the customs....let alone the road home.  This lost feeling will pass. 

    You write all you want on here....there's even a place on this site for a blog if you want....ask ANY questions you want answers to, there is someone here all the time....all questions get answered.

    For the time being, your project is to eat all of everything you want....pack on some extra pounds.... Pour your fears out here, we will put many of them to rest. 

    p

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    Welcome!!

    Welcome to the family!  This is the greatest group of people you'll "meet". They were so kind, thoughtful and truly helped me through all of my treatments.  I am 4 months cancer free TODAY!  You will get so much support, encouragement, and questions answered here.  I'm sorry you have to be here, but you've found a great place.  Post often, keep us updated, and take a deep breath.  We here to fight with you! 

  • Grandmax4
    Grandmax4 Member Posts: 723
    Take our hands

    and we'll walk you down the road that leads to your good health. It's a bumpy, curvy road at times, but, you'll make it. I have been cancer free 2 years November 2.I had a cancerous mass on my epiglottis and it had to be removed, in the 2 years since, I have learned to swallow and eat anything I please, my voice is also back 100%. Don't look back, you're not going that way~~keep looking forward and Up.

  • Steve5
    Steve5 Member Posts: 147
    lornal said:

    Welcome

    Welcome Steve.  Sad you had to visit, but glad you came.  I just recently joined myself.  I am 6 years out myself from tonsil cancer.  I joined because I have been having some really late side effects from the radiation.  Appearantly, they are not common - my radiation onc told my I'm the first one he's had with issues this late in the game.  Evem with these problems, I'm glad I'm alive to complain about them!

    Wanting to be alive is imporatant, and will certainly help get you through - along with all the folks on this site.  Full of support and suggestions!

    Welcome

    Thanks lornal - this really helps - I am so happy to read 6 years out - thanks for the support -not sure what to say right now, now just waiting until tomorrow to see what the dr says.

    Steve5

  • Steve5
    Steve5 Member Posts: 147
    new to this

    This is so wonderful, thanks all of you, thank you all for your words,, feelings and support - this is really helping to think about what is coming and what I want afterwards - to be able to write to all of you over and over again for years and years - thank you all for letting me write, for letting me join your families and the fight against this - and to lean on you, somehow reading your responses and going back and reading them again is helping - thanks

    Steve5

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    Steve5 said:

    new to this

    This is so wonderful, thanks all of you, thank you all for your words,, feelings and support - this is really helping to think about what is coming and what I want afterwards - to be able to write to all of you over and over again for years and years - thank you all for letting me write, for letting me join your families and the fight against this - and to lean on you, somehow reading your responses and going back and reading them again is helping - thanks

    Steve5

    Hello Steve!

    and survive you will!  You got this and a whole bunch of suvivors on here to hang out when you are done with treatments.  I can't add to anything all have said, but what I can do is whisper a prayer for strenght, healing and sanity :) ...crazy overload at the moment, but just like a marathon keep looking ahead, one foot in front of the other and look for that finsih line!

     

    Best,

     

    Tim

    Prayer whispered as I hit the submit button!!!!  Carry on!

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome...

    Sorry I'm late for the welcome party....

    Most all of the good advice has already been said....

    Just be aware, we were all once where you are, both mentally, emotionally, and physically. We got through, so will you.. If you are lucky, as I was, you'll get through with minimal complications, pain and suffering...

    Well, that's kind of misleading, LOL... I guess as well as you can get through, considering cancer, surgery, chemo and radiation.

    You'll have to excuse me, I'm one ofthose abi-normal guys...

     

    Bottom line though, you will get through it...attiude is huge (especially a positive one),determination, and hopefully some good genetics that you aren't aware of. 

     

    Best,

    John

  • josh r.
    josh r. Member Posts: 264 Member
    "want to beat this..."

    Hi Steve,

    Like so many of our teamates have pointed out how a positive attitude can be "the strongest medicine" let's make a slight adjustment to your "want to beat this.." to "I am going to beat this!" I truly believe that my attitude of "never give up", thanks Jimmy Valvano and others, is the reason that I am NED since November 22nd 1991. It is that and the remarkable Dr.s and support staff, family, friends, my incredible wife and my Higher Power that I am writing this tonite. This wonderful "family of CSN" was not known to me at the time but I sure wish it was. These wonderful people are truly the "Pinces and Princesses of Peace and support." We won't go away and we want you to keep close and keep the "Faith" for that maybe the strongest "medicine " you have without any "side affects". You WILL beat this! josh r.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    josh r. said:

    "want to beat this..."

    Hi Steve,

    Like so many of our teamates have pointed out how a positive attitude can be "the strongest medicine" let's make a slight adjustment to your "want to beat this.." to "I am going to beat this!" I truly believe that my attitude of "never give up", thanks Jimmy Valvano and others, is the reason that I am NED since November 22nd 1991. It is that and the remarkable Dr.s and support staff, family, friends, my incredible wife and my Higher Power that I am writing this tonite. This wonderful "family of CSN" was not known to me at the time but I sure wish it was. These wonderful people are truly the "Pinces and Princesses of Peace and support." We won't go away and we want you to keep close and keep the "Faith" for that maybe the strongest "medicine " you have without any "side affects". You WILL beat this! josh r.

    hey Josh

    I just read your bio.  I hadn't realized you are nineten plus years out from treatment.  Wow, things have changed a lot since 1991.  back then your radiation treatments would have been primitive compared to now, and the chemo would have been, well, no fun at all.  You are a great example of long term survival with this cancer, dispelling the myth that "it always comes back."  Its good to have you hear posting.  There are many others like you, but they don't often find this board.

     

    Pat

  • MarineE5
    MarineE5 Member Posts: 1,030 Member

    hey Josh

    I just read your bio.  I hadn't realized you are nineten plus years out from treatment.  Wow, things have changed a lot since 1991.  back then your radiation treatments would have been primitive compared to now, and the chemo would have been, well, no fun at all.  You are a great example of long term survival with this cancer, dispelling the myth that "it always comes back."  Its good to have you hear posting.  There are many others like you, but they don't often find this board.

     

    Pat

    You are so correct Pat

    Pat,

    As you mentioned, there are many like Josh that don't find the board. I have two neighbors that are long term survivors of cancer. The one lady down the street told me she had cancer close to 30 years ago. Doctors told her she would never have children. Wrong, she had a daughter a few years later and her daughter graduated from College 2 or 3 years ago.

    Another neighbor had tonsil cancer 16 years ago, owns his own business and still working. He was a big help when he heard I had base of tongue cancer. He explained to me what I was in for and he was spot on. That was 9 years ago this month.

    My Best to You and Everyone Here

  • Steve5
    Steve5 Member Posts: 147
    CivilMatt said:

    you will be fine

    Steve,

    Welcome to the H&N forum, we have each stood in  your shoes and it can be overwhelmingly scary.

    Next your team will develop a treatment plan and present you with what they know.  Depending on where your SCC is located the treatment often selected by H&N  members is usually 4 choices, i.e. surgery, radiation, chemo or wait (and watch) and see or some combination..

    It seems daunting, but you will quickly select the best choice(s), with their help, for you.

    Treatment can be tough, but from my perspective very doable and believe me I was as trustingly blinded, and frightened by the treatment plan as anyone.

    I also was determined to give it my best shot and paid close attention to information that I could use to help myself manage the side effects.

    Jumping over the treatment plan for a moment, you will come out the other side and without cancer.  That is another common goal of the H&N forum.

    Relax and good luck,

    Matt

    New to this

    Matt - I have read some of your other posts as well - you are the best - what a source of strength - thank you - I am taking courage from what you and others are saying to beat this thing, stay around, live - do what has to be done - thanks!!

    Steve5

  • Steve5
    Steve5 Member Posts: 147
    j4mie said:

    Hi Steve...

    So sorry you are here, but welcome to the family Smile My husband was diagnosed in Aug. 2013 and is currently in the midst of treatment. Your post really hit home, as I can vividly remember the feelings that you describe happening in our home only a couple of months ago. It is the most scary thing that had ever happened to him, me and our family up to that point. However, you will get through it...you have definitely come to the right place. I have found that no matter the time of day, I have found people (very quickly becoming an 'extended online family') who have been in our shoes that have been willing to lend an ear, a suggestion, or a ray of hope. So, write and ask plenty of questions.

    On a quick note, in our short experience so far, the hardest part was waiting to start the treatment. Once you have a game plan, and start your 'fight' it is a huge relief. Hang in there!

    Jamie

    new to this

    Jamie - thank you for your words and caring - best to you and your family -let's all beat this - I am taking courage from this -thanks -

    Steve5

  • Steve5
    Steve5 Member Posts: 147

    Hi Steve

    sorry you had to join, but this is a very helpful club.  First take a deep breath.  This will be a marathon, not a sprint.  We were all overwhelmed at the start, but if you will take it one step at a time, it is pretty doable.  First a word about all the emotionally charged buzzwords.  Forget stuff like "advanced" squamous cell carcinoma.  That just makes you think there isn't a chance in the world, doesn't it?  Actually,. the word advanced doesn't have any meaning when put in front of SCC.  You have ordinary garden variety scc, just like everyone else.  See the doctor,  make a plan.  There is plenty of time to fill in all the details.

     

    best to you

     

    Pat

    new to this

    Pat - thanks - thanks so much for the information and your words - and I love your - I still have to hike the entire Appalachian Trail - I backpacked in my 20's, I want to backpack again and again.  I like this - see the doctor - make a plan.  Thanks

    Steve

  • Steve5
    Steve5 Member Posts: 147

    Hi Steve

    sorry you had to join, but this is a very helpful club.  First take a deep breath.  This will be a marathon, not a sprint.  We were all overwhelmed at the start, but if you will take it one step at a time, it is pretty doable.  First a word about all the emotionally charged buzzwords.  Forget stuff like "advanced" squamous cell carcinoma.  That just makes you think there isn't a chance in the world, doesn't it?  Actually,. the word advanced doesn't have any meaning when put in front of SCC.  You have ordinary garden variety scc, just like everyone else.  See the doctor,  make a plan.  There is plenty of time to fill in all the details.

     

    best to you

     

    Pat

    new to this

    Pat - thanks - thanks so much for the information and your words - and I love your - I still have to hike the entire Appalachian Trail - I backpacked in my 20's, I want to backpack again and again.  I like this - see the doctor - make a plan.  Thanks

    Steve

  • Steve5
    Steve5 Member Posts: 147

    Hi Steve

    sorry you had to join, but this is a very helpful club.  First take a deep breath.  This will be a marathon, not a sprint.  We were all overwhelmed at the start, but if you will take it one step at a time, it is pretty doable.  First a word about all the emotionally charged buzzwords.  Forget stuff like "advanced" squamous cell carcinoma.  That just makes you think there isn't a chance in the world, doesn't it?  Actually,. the word advanced doesn't have any meaning when put in front of SCC.  You have ordinary garden variety scc, just like everyone else.  See the doctor,  make a plan.  There is plenty of time to fill in all the details.

     

    best to you

     

    Pat

    new to this

    Pat - thanks - thanks so much for the information and your words - and I love your - I still have to hike the entire Appalachian Trail - I backpacked in my 20's, I want to backpack again and again.  I like this - see the doctor - make a plan.  Thanks

    Steve

  • ratface
    ratface Member Posts: 1,337 Member
    MarineE5 said:

    You are so correct Pat

    Pat,

    As you mentioned, there are many like Josh that don't find the board. I have two neighbors that are long term survivors of cancer. The one lady down the street told me she had cancer close to 30 years ago. Doctors told her she would never have children. Wrong, she had a daughter a few years later and her daughter graduated from College 2 or 3 years ago.

    Another neighbor had tonsil cancer 16 years ago, owns his own business and still working. He was a big help when he heard I had base of tongue cancer. He explained to me what I was in for and he was spot on. That was 9 years ago this month.

    My Best to You and Everyone Here

    Advanced treatment

    is the key to advanced SCC.  Just throw the word right back at it.  Follow the plan. That's me running a 5K race 3 years after treatment. Your survival chances are real.  Welcome to the Board.