4th Recurrence

Rick2924
Rick2924 Member Posts: 23
in Head and Neck Cancer #1

Well, I don't seem to be able to beat this thing. I was just diagnosed with another tumor on my base of tongue. This is my 4th reucrrence since my original diagnosis 5 years ago. Because I've had prior tongue base resections, the only surgical option at this point is a total glossectomy with a free flap from my rectis abdominis muscle. Because of my prior surgeries, I would have almost no tongue base left to help with movement of the flap.

I'm wondering what others in the group who have undergone a total glossectomy have to say about recovery from such an operation as well as the potential for speech afterwards.

Because of my history of , all my docs feel I would still have a very high likelihood of another recurrence after this surgery so I also have to consider just slowing things down with chemo and letting nature take it course. I just don't know which way is going to tougher on me and more importantly, my family.

Thanks for any input.

Rick

 

 

 

 

 

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Rick...

    I don't have advice, as I didn't have BOT surgery (or any surgery for that matter)....but I am sitting here in awe at your toughness and your resiliance.  I'm wishing you the best in whatever decision you lean towards. 

    I'm sure someone on here has had a total glossectomy, and will have some words of wisdom.

    p

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #3
    rick, i just want to say i'm

    rick, i just want to say i'm very sorry for the battle you find yourself n again.  i'm also sorry for the situation u've been faced with and the very hard decision you must make.  i will be praying for God to bless you with strength and courage to get thru this.  good luck w/whichever decision you make.

    keeping you in my prayers,

    dj

  • Crazymom
    Crazymom Member Posts: 339 Member
    #4
    prayers your way

    Tough decision.  sending prayers your way....Ann

     

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    Hi Rick

    I can sure understand your reluctance to submit to yet another surgery.  This type of surgery is pretty extreme, if your situation is one where recurrance after it is a high order risk.   What is your radiation history?

     

    best to you

     

    Pat

     

  • hwt
    hwt Member Posts: 2,328 Member
    #6
    longtermsurvivor said:

    Hi Rick

    I can sure understand your reluctance to submit to yet another surgery.  This type of surgery is pretty extreme, if your situation is one where recurrance after it is a high order risk.   What is your radiation history?

     

    best to you

     

    Pat

     

    Rick

    So sorry to learn of your dx. I'm on my 1st recurrance but my cancer was in jaw and now in carotid cavity. No one would tackle it surgically because of the tight location to so many important things. I found hope at Mayo and had SBRT tx a week ago. No results for 3 months. I can't imagine your situation for a fourth time. Remember that you are your own best advocate. Keep researching. Hopefully, someone on this site can offer options that they had. Maybe inquire at MDAnderson.

     

    God bless 

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #7
    Me too!

    It is not a competition, but I am on number 4 also.  I am having Cyberknife this Wednesday and Thursday and possibly Friday.  I don't know about the surgery that you are facing.  Second opinions are always a good option.

  • peggylulu
    peggylulu Member Posts: 375
    #8
    I agree

     

    with HWT and KTeacher , If you can get to MD Anderson or another large Cancer Center  get a second opinion. My best to you whichever way you choose to go.

     

    peggy

  • josh r.
    josh r. Member Posts: 264 Member
    #9
    Going for fourth win

    Hi Rick,

    You have beat it THREE times and we're all pulling for victory number four. I don't have experience with what you're fighting but you have all my prayers with you. God Bless, josh r.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Coming Your Way

    Thoughts and prayers to beat this for good...

    John

  • Viilik70
    Viilik70 Member Posts: 73
    #11
    4th recurrence

    I feel for you because you are such a trooper and been through so much that I can't imagine! I'm notrying to tell you what to do, but get right with God and I truly think you will be lead to the right decision and He will take care of you and your family. he knew you since before you were born and he has numbered the hairs on your head. God will take care of you!

  • sin9775
    sin9775 Member Posts: 199 Member
    #12
    Another Recurrence

    I can not fathom what you and your dear family are going through now.  I am sorry I don't have any advice for you, but please know that I will say a special prayer for healing for you and for you to receive the strength it is going to take to deal with whatever lies ahead for you on this tough journey you are on.  God bless you, Rick.

    ~Shawn~

  • hwt
    hwt Member Posts: 2,328 Member
    #13
    sin9775 said:

    Another Recurrence

    I can not fathom what you and your dear family are going through now.  I am sorry I don't have any advice for you, but please know that I will say a special prayer for healing for you and for you to receive the strength it is going to take to deal with whatever lies ahead for you on this tough journey you are on.  God bless you, Rick.

    ~Shawn~

    Post

    Sept. 10th post by JackFlash might have some helpful info for you. Worth looking into.

  • Greg53
    Greg53 Member Posts: 849
    #14
    hwt said:

    Post

    Sept. 10th post by JackFlash might have some helpful info for you. Worth looking into.

    Mojo

    Rick,

    Definitely impressed with your perserverance and positive attititude.  Good luck with whatever you do! 

    Best to you!

    Greg

    ps- sorry no advice - tonsil guy here vs tongue

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #15
    to do or not to do

    I can't advice you what you should or shouldn't do. We all have decisions to make in life...if it were me I'd take life and fight again for it.  Many people have to have the tongue removed first time and I've read postings from those that have and they get along just fine. Is there a way to have a voice box fitted or a mechanical speaking aid. My room mate in hospital had her voice box removed and was told they will get her speaking again. Another article I read is a tongue can be made out of tissues from the body, dont know much about it but was in awe at what they can do these days. Your family will be right behind you I'm sure, whatever you decide, can you take it, have you any fight left, don't give up till "the fat lady sings" as the saying goes. Good luck on you decision....Prayers will be said for you..

  • Hondo
    Hondo Member Posts: 6,636 Member
    #16
    Hi Rick

    Wow I can feel your pain as being one who is always told bad news myself. If your body is still in good shape and you can still enjoy life do what you need to do to get rid of it, if #5 comes deal with it the same way. My NPC came back 3 times and I still fight it every day of my life because it is there but for some reason just stopped growing a few years ago. I live on a PEG tube but still work full time and enjoy being a part of my grandchildren’s life. It is what it is and by no means give-up..

     

    I do a lot of praying and will keep you in my prayers

    Hondo

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