Options for treatment

kjp37
kjp37 Member Posts: 11
in Head and Neck Cancer #1

For a while I have been worrying about a total glossectomy. I really don't think my quality of life will be very good without a functional tongue especially at the age of 19. I worry that I may receive a total glossectomy due to nearly over half my tongue being indurated. I have done all my scans and FNA and am now waiting to hear my treatment plans. I guess what I want to ask is how much of my treatment will I get I say in? I know the doctors need my consent to do anything. But I really don't want to loose my entire tongue

Comments

  • kjp37
    kjp37 Member Posts: 11
    #2
    BTW

    The doctor who gave me my diagnosis said I will most likely need to have surgery, chemo and radiotherapy 

  • hwt
    hwt Member Posts: 2,328 Member
    #3
    kjp37 said:

    BTW

    The doctor who gave me my diagnosis said I will most likely need to have surgery, chemo and radiotherapy 

    kjp

    Sorry you are having to make these decisions at such a young age. You will be able to have the final say on what treatment you choose and the opportunity to get second and even third opinions from other doctors to allow you to make the most educated decisions. It is good to take someone with you to these appointments and best to write some questions down before you go.

    God bless,

    Candi

  • wmc
    wmc Member Posts: 1,804
    #4
    It will be your decision...................

    First and formost right now is you need to make a list of questions you have for the doctors. Write then down and leave space to write the answers. If you ae going to a major hospital that has a tumor board, they are the best, because all the doctors all get together and decide what is best for you, with what options you have.

    You are in a tough spot and have so much on your mind. For tounge they will most likely want to do radiation and chemo and surgery. When they explain your options, [have a second person to help listen to what they are saying] ask questions. The doctor will say something and you will go blank........ It's ok all most all of us did. Your age playes a big part in your dission. You're young and you will bounce back better than someone much older. It also goes aginst you in that you are thing about quality of life way to soon. Having a full glossectomy is not something anyone ever wants, inless it can mean your life. I thought I had all things the doctor covered he could say, I was wrong. He came in and said your lungs are to bad, and you won't survive surgery or radiation. Which ment, good by and we will try to make it easy and pain free for your final days..... Then he said, if we give you a trach and you will breath through a hole in your neck and we remove your vioce box, we can do the surgery and remove the tumor. Of corse I said yes, I want to live. Yes I an thankful every day I wake up. 

    You have a hard dission to make, but I would go for it. It will be a rough road but we will be on your side and bethere for suport on what wver your dission is. What you need to do is get the attude you will fight and you will win and do what ever you need to do to survive. If you do, you will get through this. Praying doesn't hurt eithor. best of luck and be at peace with what ever you decide.

    Bill

  • MGC
    MGC Member Posts: 72 Member
    #5
    wmc said:

    It will be your decision...................

    First and formost right now is you need to make a list of questions you have for the doctors. Write then down and leave space to write the answers. If you ae going to a major hospital that has a tumor board, they are the best, because all the doctors all get together and decide what is best for you, with what options you have.

    You are in a tough spot and have so much on your mind. For tounge they will most likely want to do radiation and chemo and surgery. When they explain your options, [have a second person to help listen to what they are saying] ask questions. The doctor will say something and you will go blank........ It's ok all most all of us did. Your age playes a big part in your dission. You're young and you will bounce back better than someone much older. It also goes aginst you in that you are thing about quality of life way to soon. Having a full glossectomy is not something anyone ever wants, inless it can mean your life. I thought I had all things the doctor covered he could say, I was wrong. He came in and said your lungs are to bad, and you won't survive surgery or radiation. Which ment, good by and we will try to make it easy and pain free for your final days..... Then he said, if we give you a trach and you will breath through a hole in your neck and we remove your vioce box, we can do the surgery and remove the tumor. Of corse I said yes, I want to live. Yes I an thankful every day I wake up. 

    You have a hard dission to make, but I would go for it. It will be a rough road but we will be on your side and bethere for suport on what wver your dission is. What you need to do is get the attude you will fight and you will win and do what ever you need to do to survive. If you do, you will get through this. Praying doesn't hurt eithor. best of luck and be at peace with what ever you decide.

    Bill

    OPTIONS

    I do not know your particular diagnosis but many people here have had successful treatment ot tongue cancer with no Radiation. Not saying that is always the case but just saying.

    If you have a 2nd opinion it is alwys worth it. If you can get to a university hospital or major Cancer Center even better.

    Good luck and welcome to the CSN

    Mark

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6
    welcome

    kjp,

    I was stage IVa scc, base of tongue and had surgery, radiation and erbitux and I am still whistling.

    Did your team tell you it’s a total glossectomy?  If not, I wouldn’t borrow trouble till it is time.

    Don’t forget what the others have said and I wish you the best of luck.

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    kjp37 said:

    BTW

    The doctor who gave me my diagnosis said I will most likely need to have surgery, chemo and radiotherapy 

    kjp, i just want to tell you

    kjp, i just want to tell you that i will be praying for God to help you gain the information you need to make an well informed decision.  you have the final say so about what happens to you and getting a second and maybe even a third opinion is a great idea.  see what options the other doctor(s) offer.  wishing you the very best and we will be hear to cheer you on along the way.  its not an easy road but one that has been traveled by many here and they're all living proof that it can be done!  you will come through this.  its sad that you are facing this crap at such a young age, but that will probably work in your favor.

    God bless you,

    dj

  • MrsBD
    MrsBD Member Posts: 617 Member
    #8
    Surgery

    My treatment for Stage 4 BOT cancer was radiation and chemo (Erbitux). No surgery. You will probably be given several options. Your treatment is your choice. You should have been told too that if you have surgery on your tongue, they can construct a new one.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #9
    Hi kjp

     

    It is hard for everyone going through crap but worse when you are young like yourself. I have a tongue but it is dead in my mouth, it is very hard for people to understand me when I talk, but I find ways to get around all that. I know this is very hard for you but take it for an old trimmer, never give in or give up. You have a lot of living ahead of you and you will find a way with or without your tongue.

    Wishing you all the best

    Tim Hondo

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #10
    2nd Opinionsest o

    Like the others said it is crtictal to get several opinions and to make sure the doctors are on the same page.  I got an opinion from my local doctors who are great, but not a cancer "team".  I went to the Cleveland Clinic and got differnent set of information.  Using both I was able to make what I beleive were the best decisions.  I did get treatment locally as the local doctors are affiliated with a major university, but getting infomation is essental.  Also like others said write it all down.  If you are anything like me it will all soon become a blur and you need to keep it all organized.  All my best to you and keep us infomed of how things are going.  At your age and given you are smart enough to get on here and to think about how this will all work I beleive it will turn out better than your worst fears and that you will be OK.

  • kjp37
    kjp37 Member Posts: 11
    #11
    HobbsDoggy said:

    2nd Opinionsest o

    Like the others said it is crtictal to get several opinions and to make sure the doctors are on the same page.  I got an opinion from my local doctors who are great, but not a cancer "team".  I went to the Cleveland Clinic and got differnent set of information.  Using both I was able to make what I beleive were the best decisions.  I did get treatment locally as the local doctors are affiliated with a major university, but getting infomation is essental.  Also like others said write it all down.  If you are anything like me it will all soon become a blur and you need to keep it all organized.  All my best to you and keep us infomed of how things are going.  At your age and given you are smart enough to get on here and to think about how this will all work I beleive it will turn out better than your worst fears and that you will be OK.

    Thanks

    Thank you all for your replies. I will be going to royal Marsden for treatment, which is one of the best cancer hospitals in Europe, I think. My consultant also seems to be pretty good. But still waiting for a appointment. I feel like the cancers spreading more and more everyday though 

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #12
    kjp37 said:

    Thanks

    Thank you all for your replies. I will be going to royal Marsden for treatment, which is one of the best cancer hospitals in Europe, I think. My consultant also seems to be pretty good. But still waiting for a appointment. I feel like the cancers spreading more and more everyday though 

    Spreading?

    I am over two years out from my treatment and get a creepy feeling from time to time like my cancer is spreading even though its very unlikely that I have any cancer at all.  Before I started treatment some days I felt great other days I knew I was done for and that my cancer was spreading.  The mind games cancer plays are almost as bad as the desiease itself.  Do your best to put in your doctor's hands and let them take the burden off as much as you can.  Sounds like you are going to the right place and have the right doctors.  Keep letting us know how you are doing and let us also share the load you are carrying.

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