tongue cancer

Kayse
Kayse Member Posts: 2

Have tongue cancer, going for pet scan.  What a deal  life throws a curve sometimes.  Trying to hang on  pretty weary.  Much love and courage to all who travel this road.

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Kayse, welcome, but so sorry

    Kayse, welcome, but so sorry you need to be here.  my cancer was larynx.  2009 then 2012.  been cancer free since 2/28/12.  you will get lots of help here and encouragement too.  it is hard to hear the words you've got cancer, but we will help you through this.  do you have a plan of tx yet?  i will be praying for tx to go smoothly and look forward to celebrating with you when you cross the finish line!

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N group Kayse...

    Welcome and also sorry you need to be here. At least you did find the best support group there is. Mine was just above my vocal cords, supraglottic SSC T3;N0;M0 [Just before surgery it was T4;N2;M0 and lots of weight loss] coughed up lots of blood and that really scared my family. No chemo or radiation just surgery to remove my larynx [COPD stage 3] that was the only way they would consider doing it as I would not survive radiation or surgery. Did a neck dissection on both sides as a precaution and removed 86 glands. I have been NED [No Evedence of Disease] for 18 months and did get the weight back.

    You are about to go down a very bumpy road, and it can really be rough at times. However the good news is, you can do it as so many have and will get all the support you need here. When you go to the doctors please take someone with you, and also write down your questions and just hand them to the dortor. They will no dought say something and you'll go blank and forget what you wanted to say. I did do lots of research, but only certain ones are upto date and have real info. I checked the Superthread here on the first page and got lots of good info. I still go to it. I knew what was going to happen and really prepaired for anything he would say, I was so wrong. He came in and sat down and said my lungs were to bad and I won't survive radiation or surgery. My brain stopped, then he did say I do have one option. Remove my larynx and breath out my neck for life. No a hard dission, I just said you schedule it . I was given a second chance on life and am doing great with it.

    Remember when you have a bad day just come here and write it down as it can really help get it out. Plus we do under stand what you are going through and feeling scared is very normal, we ALL did. Also write the good days and cellabrate all the small things as they are major steps for you. The first time you can swallow is so overwhelming a feeling to a survivor. We are open 24/7. I'll add you and your family to my prayer list. Now at night I say please remember all on this long list, and it seams to help. It sure did for me and I thank him every morning I wake up. Just take one day at a time, and only today matters, the tomorrows come later.

    Bill  10.02.2013

  • MrsBD
    MrsBD Member Posts: 615 Member
    Hi, Kayse. Welcome to the

    Hi, Kayse. Welcome to the group. This is a wonderful place for advice and support as you can tell from Bill and DebbieJeanne's comments. Here you'll find not only suggestions, but hope. My cancer was BOT, Stage 4a, HPV negative, and had spread to a node on each side of my neck. My treatment included 8 weeks of radiation  and chemo ( Erbitux ),  but no surgery. I'm 7 months post-treatment and feel great. It didn't seem possible when I was where you are now. Please log in anytime. You will be in my prayers too.

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    welcome

    Kayse,

    Welcome to the H&N forum, where most of us took a curve ball, but not to worry you will learn to hit them.

    Good luck,

    Matt

  • Duggie88
    Duggie88 Member Posts: 760 Member
    Kayse

    Yes it sends you for a loop. Keep a fighter mentality and stay positive. Many on here have been through what your going through and can help you through your journey. Don't be afraid to ask questions.

          Jeff

  • thennies61
    thennies61 Member Posts: 285
    I too went though this.At

    I too went though this.At first I thought it was nothing then took off like a rocket under my tounge.Had cat and pet scans all came back with a cancerous tumor.I have a great doctor who knew his stuff and sent me to the right people.They ended upi taking around 1/2 of my tounge took some muscle from my thigh and rebulit it and attached it my my jaw.I did go though radiation and not chemo but a trail drug.Be sure to ask your team about a speach and swallowing specialist for after.They are very helpful in everything.I had some fulid build up under my chin from having some lodes removed to check to be no other cancer was there.My specialist then sent me to a massage guy and he got all the fulid moving again.It is very doable but not easy.Listen to all they say ask questions to them and hear.People here have great advice and tips which got me though it.Good Luck and keep smiling it psses cancer off.

  • Reggie13
    Reggie13 Member Posts: 9
    Base of Tongue Cancer

    Hi there, diagnosed with basse of tonque cancer in 2003, had chemo and radiation, cancer free to date (Thank God), suffering now with serve side effects for the radiation treatment (extremed dry mouth, can't swallow anything at all (on peg tube now for 2 years), now serv speech problems (soft palate harding moving at all), nerve damage to tongue after wisdom pull.  The inability to speak well is really getting me down.  Has anyone gone through any of this?  It would be great to converse with someone who has!   God Blessing to everyone.  In spite of it all I'm still too blessed to be stressed!

  • thennies61
    thennies61 Member Posts: 285
    Reggie13 said:

    Base of Tongue Cancer

    Hi there, diagnosed with basse of tonque cancer in 2003, had chemo and radiation, cancer free to date (Thank God), suffering now with serve side effects for the radiation treatment (extremed dry mouth, can't swallow anything at all (on peg tube now for 2 years), now serv speech problems (soft palate harding moving at all), nerve damage to tongue after wisdom pull.  The inability to speak well is really getting me down.  Has anyone gone through any of this?  It would be great to converse with someone who has!   God Blessing to everyone.  In spite of it all I'm still too blessed to be stressed!

    My speach isn't exactly where

    My speach isn't exactly where I want as my swallowing isn't either.They had to remove around 1/2 of tounge and made a tounge flap from my thigh and attached it to front of lower jaw.So speaking is like holding your tounge down.Learned alot as the the tounge hits the roof of mouth to form certain words.I have gone to a speach and swollowing specialist which has helped greatly.But that my pet and cat scans have all come back clean I went back into the hospital and had a hole in my jaw that hasn't filled in yet and they tool some leg bone and filled it in to make it harder and solild.So the plan is that once that hardens and heals will go back and they will trim my jaw line even and to fit lower implants.And my top will dentures.But as they fit the top for dentures with a thicker palate so my tounge will hit it somewhat normally.As my doecote said this will greatly improve speach and being able to eat again.As you heal asked doctors if this is possible.I am lucky to have a doctor that works with a denist that specilizes in this.