Just diagnosed with SCC on tongue.

BarefootBob
BarefootBob Member Posts: 72
in Head and Neck Cancer #1
Hello,
My name is Bob and I am a 37 yr old male. I have had a history of seizures and during these episodes I occasionally chewed/bit through my tongue. Needless to say there was a build up of scar tissue and over the past 3/4 years I would bite it while eating, talking etc. Anyway, about two weeks ago there was an abnormal infection over the 'normal' scar tissue that was treated w/ antibiotics and to no avail. I saw an ENT who then did a biopsy. The test came back positive for Squamous Cell Carcinoma. I have a CT/PET scheduled for the end of this month (May 2012) and I guess they will know more then. I wanted to introduce myself and find a informative and supportive group.

Thanks for lending an ear.

-Bob

Comments

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #2
    Welcome aboard
    Bob,

    I am glad that you found this site, but sorry to see that you have to be here at all. You will see that there is allot of experience here and sound advice. You are in the "Twilight Zone" for awhile, being in the waiting phase of gathering information about what you have going on.

    My Best to You and Everyone Here
  • Sam999
    Sam999 Member Posts: 319 Member
    #3
    Welcome to the group Bob, i
    Welcome to the group Bob, i am also a newbie here but am very happy that i found this group. Everyone is very helpful and have ton of info. I am done with my surgery and have started radiaion for past two days.

    Have they scheduled your surgery? I would suggest you move as fast as possible, of course make sure you have the right doc and right hospital.

    Sam
  • nwasen
    nwasen Member Posts: 235 Member
    #4
    MarineE5 said:

    Welcome aboard
    Bob,

    I am glad that you found this site, but sorry to see that you have to be here at all. You will see that there is allot of experience here and sound advice. You are in the "Twilight Zone" for awhile, being in the waiting phase of gathering information about what you have going on.

    My Best to You and Everyone Here

    Welcome Bob
    My dad who had a warped sense of humor would say it's Bob with one O.
    Welcome and so sorry you have to be here but you did find the best place to be for support and advice. I only came on after the fact and wish I had found these wonderful people earlier.
    I am 18 months out with having stage 4 and doing fantastic.
    Keep us posted on what you are dealing with Bob.
    Nancy
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #5
    MarineE5 said:

    Welcome aboard
    Bob,

    I am glad that you found this site, but sorry to see that you have to be here at all. You will see that there is allot of experience here and sound advice. You are in the "Twilight Zone" for awhile, being in the waiting phase of gathering information about what you have going on.

    My Best to You and Everyone Here

    Hiya Bob.
    Welcome to our "Club" you will find an abundance of info on here
    in fact you will proberbly find more than what your doctors say. The people
    on here have been there, done that!!! so in my eyes these "Friends" on here
    Will answer most of your questions. Skiffin will chime in and post the link
    to the SUPERTHREAD,(I don't know how) there is a lot of info on it.
    Anyway sorry you find yourself here, but you will be glad you found it.

    Keep positive and have faith.

    God bless
    Tonsil dad,

    Dan.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
    Hi Bob....
    You hit the jackpot in finding an informative and supportive group, when you came here. This group of folks know SO much, have been thru so much (or are now going thru treatment)...you couldn't have found a better place.

    A warm welcome to you....

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    HI BOB...
    LOL, sorry alwyas reminds me of the Bob Newhart show...and drinking game.

    Anyways, you have found an awesome support group here.

    Welcome and hang on for the ride...

    Here's a good starting point for newbies such as your self...like Dan mentioned...

    SUPERTHREAD

    A compilation of links, information and tons of great expereinces all shared from us, and put to a tread by Dawn (sweetblood22)....

    Thoughts & Prayers,
    John
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #8
    phrannie51 said:

    Hi Bob....
    You hit the jackpot in finding an informative and supportive group, when you came here. This group of folks know SO much, have been thru so much (or are now going thru treatment)...you couldn't have found a better place.

    A warm welcome to you....

    p

    Hello Bob ...
    As others have said, sorry you have to be in our club...but you could not have found a better place.

    I really encourage you to look at the link John posted called SUPERTHREAD ...it's a great link to a lot of information. (thanks John for all the work on that ...I go to it often still).

    So...now you have to keep us posted on the stage of your cancer and if it is HPV positive (you will get all this down soon).

    I was base of tongue stage III with 1 lymph node invovled and HPV + ...and I just got my first PET / CT scan May 7th and it was all clear ....so remember whatever happens this can be beat.

    Prayers for you Bob ...

    Tim
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Tim6003 said:

    Hello Bob ...
    As others have said, sorry you have to be in our club...but you could not have found a better place.

    I really encourage you to look at the link John posted called SUPERTHREAD ...it's a great link to a lot of information. (thanks John for all the work on that ...I go to it often still).

    So...now you have to keep us posted on the stage of your cancer and if it is HPV positive (you will get all this down soon).

    I was base of tongue stage III with 1 lymph node invovled and HPV + ...and I just got my first PET / CT scan May 7th and it was all clear ....so remember whatever happens this can be beat.

    Prayers for you Bob ...

    Tim

    Sweetblood22 ~ Dawn...
    Actually Dawn is the one that keeps it up and maintains it... I just showed her initially how to do the HTML for links and color.

    She originally constructed and maintained that entire page from her iPhone, LOL...talk about tedious..... she has an iPad that she works from now mainly I believe.

    Anyways, it is a great source of info.

    The site that I put up and update occasionally is the CSN Survivor Map;

    Where in the World Are You

    It's getting pretty big anymore, so you have to give it a few to load....really cool in Google Earth.

    Best,
    JG
  • Laralyn
    Laralyn Member Posts: 532
    #10
    So glad you found us!
    As everyone else said, it's a club we wish no one had to join!

    This is an amazing place--it really is. It has been one of the bright spots during my treatment. Don't be afraid to post whatever you're thinking and feeling. Whatever it is, someone here has been through it and can help.

    One small piece of advice: while you're waiting for the PET scan, start thinking about where you would like to get a second opinion. You can go ahead and call places and even meet with people to see how you feel about your options for care. They probably won't want to actually have a consultation until the PET results are in, but this gets the ball rolling a little more quickly. At least for me, waiting is the worst.

    There are folks at all different points of treatment on the board. Most are survivors--done with treatment, and cancer free! There are several of us going through different types of chemo and radiation, though, so don't hesitate to ask questions!
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #11
    Laralyn said:

    So glad you found us!
    As everyone else said, it's a club we wish no one had to join!

    This is an amazing place--it really is. It has been one of the bright spots during my treatment. Don't be afraid to post whatever you're thinking and feeling. Whatever it is, someone here has been through it and can help.

    One small piece of advice: while you're waiting for the PET scan, start thinking about where you would like to get a second opinion. You can go ahead and call places and even meet with people to see how you feel about your options for care. They probably won't want to actually have a consultation until the PET results are in, but this gets the ball rolling a little more quickly. At least for me, waiting is the worst.

    There are folks at all different points of treatment on the board. Most are survivors--done with treatment, and cancer free! There are several of us going through different types of chemo and radiation, though, so don't hesitate to ask questions!

    Good Support System!
    Welcome, this will be a good support system for you during htis trying time! Also, check out the oral cancer foundation!!

    Charles
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #12
    Skiffin16 said:

    Sweetblood22 ~ Dawn...
    Actually Dawn is the one that keeps it up and maintains it... I just showed her initially how to do the HTML for links and color.

    She originally constructed and maintained that entire page from her iPhone, LOL...talk about tedious..... she has an iPad that she works from now mainly I believe.

    Anyways, it is a great source of info.

    The site that I put up and update occasionally is the CSN Survivor Map;

    Where in the World Are You

    It's getting pretty big anymore, so you have to give it a few to load....really cool in Google Earth.

    Best,
    JG

    Where in the World Are You...
    Hey...I did not know about that !!! Cool

    Thanks John.

    Tim
  • hawk711
    hawk711 Member Posts: 566
    #13
    Irishgypsie said:

    Good Support System!
    Welcome, this will be a good support system for you during htis trying time! Also, check out the oral cancer foundation!!

    Charles

    Welcome Bob
    I am 26 months post treatment for SCC with mets to neck. No surgery, just rads and chemo.
    I have a story like yours, I bit my tongue at Christmas and it didn't heal in a couple weeks and I noticed a lump on the back of my tongue. So....Ent, Scan, Cancer!
    I had 36 rads and 6 rounds of cisplatin chemo....it killed the beast. Just writing this to you to say, we all have been where you are and although the treatment is tough, it works and gets you to the other side healthy.
    Glad you found us, we can help you through this mess called treatment. keep positive, be active, eat all you can and enjoy every day.....
    Hope we are helping you...
    Steve
    P.S. I have to get me a cool pic like yours...I'll start looking.
  • BarefootBob
    BarefootBob Member Posts: 72
    #14
    hawk711 said:

    Welcome Bob
    I am 26 months post treatment for SCC with mets to neck. No surgery, just rads and chemo.
    I have a story like yours, I bit my tongue at Christmas and it didn't heal in a couple weeks and I noticed a lump on the back of my tongue. So....Ent, Scan, Cancer!
    I had 36 rads and 6 rounds of cisplatin chemo....it killed the beast. Just writing this to you to say, we all have been where you are and although the treatment is tough, it works and gets you to the other side healthy.
    Glad you found us, we can help you through this mess called treatment. keep positive, be active, eat all you can and enjoy every day.....
    Hope we are helping you...
    Steve
    P.S. I have to get me a cool pic like yours...I'll start looking.

    Thank You All
    I just wanted to say thank you to all of the kind words and suggestions from all of you so far. I will visit this 'SUPERTHREAD' that you all speak of. Yes, waiting has been the hardest, so far. I know nothing other than its cancer. The CT and PET results should reveal more (still about 10 days away) and I will definitely keep you all updated. I have so many questions and concerns. As, most of you stated, its unfortunate to meet under our circumstances, but believe that through this community's strength, hope, prayers and experiences - its a blessing I don't have to go through this alone.

    Much Love to all of you and thanks for the warm welcome.

    - hawk, I do tons of graphic design stuff on the side of my normal life at an IT engineer and could design you anything you like :)

    Thanks again.

    Bob
  • Pam M
    Pam M Member Posts: 2,196
    #15
    BarefootBob said:

    Thank You All
    I just wanted to say thank you to all of the kind words and suggestions from all of you so far. I will visit this 'SUPERTHREAD' that you all speak of. Yes, waiting has been the hardest, so far. I know nothing other than its cancer. The CT and PET results should reveal more (still about 10 days away) and I will definitely keep you all updated. I have so many questions and concerns. As, most of you stated, its unfortunate to meet under our circumstances, but believe that through this community's strength, hope, prayers and experiences - its a blessing I don't have to go through this alone.

    Much Love to all of you and thanks for the warm welcome.

    - hawk, I do tons of graphic design stuff on the side of my normal life at an IT engineer and could design you anything you like :)

    Thanks again.

    Bob

    Another Welcome
    I get the feeling you've got one vital piece of the treatment puzzle down pat - the right attitude. It makes such a difference.

    I'm another survivor who's grateful for the folks on this site (past and present). I was diagnosed with stage four base of tongue cancer with two lymph nodes involved just over two and a half years ago. I got the "NED" report (no evidence of disease) thirteen months ago. Wow - just occurred to me - I missed my NED-iversary.

    Keep breathing - things can get overwhelming. Do well, and keep us updated.
  • patricke
    patricke Member Posts: 570
    #16
    Bob, I must say that I am
    Bob, I must say that I am sorry to be welcoming you to the crew, but I must also say that you have found a most informative and supportive group. We will be with you all the way in your battle with the beast; it's time to suit up. Remember, it's all about persistence and patience, along with a lot of other stuff, but the first two are at the top of the list of things that will help you with the fight.

    PATRICK

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