Aggressive Tongue Cancer Surgery

Good Morning,

I have been off and on this board since 2008 when I was first diagnosed with tongue cancer.  I have had chemo and radiation and then 3 surgeries to get rid of 'small' cancers on the tongue.  I had a biopsy last Friday and a CT scan.  The surgeon is pretty certain the cancer is back and this time I will need aggressive surgery - lose most of my tongue and have it replaced with tissue from either my arm or under my chin.  I go back Thursday for the verdict!

I am 69 years old and other than this pesky cancer - also a surviver of breast cancer, kidney cancer and melanoma - I am pretty healthy.  I wonder if any of you have been through this.  I know, if this is my fate, I have a long road ahead of me but I would love to have some idea of what that road will be like.  

Thanks to all of you in advance and wishing you a day of health and happiness.

Theresa

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Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Theresa, wow, you've really

    Theresa, wow, you've really been put thru thru thr mill.  i'm so sorry cancer has chosen you all those times.  my cancer was different so i can't offer advice or experience but i wanted to tell you I'm praying for you.    i'm praying it isn't cancer but if it is that God will bless you with the strength to beat it again!  please let us know how the doc visit goes.

    God bless you,

    dj

  • jim and i
    jim and i Member Posts: 1,788 Member
    Wow you have been through the

    Wow you have been through the mill haven't you. My husband had base of tongue cancer but no surgery so I can't advise you on the surgery part. I just want you to know that I am praying all goes well for you.

    Debbie

  • Ingrid K
    Ingrid K Member Posts: 813
    Tongue Cancer Survivor Here**

    Theresa:

    I CAN RELATE !!   I am a 3 year tongue cancer survivor and doing pretty darn good.

    I had 75% of my oral tongue removed and replaced with a "hunk" of skin, tissue, artery from my forarm, just like they are prescribing for you.

    The surgery sounds way more barbaric than it really was.  After surgery, I went through 30 rounds of radiation therapy.  The surgery was difficult but doable.  It was actually easier than the 30 rounds of treatment.  It sounds like you may have been through chemo and/or radiation before.

    I also am sending you a private message.

    Contact me directly if I can help further...

    But you can do this...after all you have been through, you can do this for sure.

    Ingrid

     

     

  • cancerx6
    cancerx6 Member Posts: 25

    Theresa, wow, you've really

    Theresa, wow, you've really been put thru thru thr mill.  i'm so sorry cancer has chosen you all those times.  my cancer was different so i can't offer advice or experience but i wanted to tell you I'm praying for you.    i'm praying it isn't cancer but if it is that God will bless you with the strength to beat it again!  please let us know how the doc visit goes.

    God bless you,

    dj

    DJ,
    Thank you so much for

    DJ,

    Thank you so much for your prayers!  They really do give me strength!  I will check in after my visit on Thursday.  Wishing you a day of health and happiness.

    Theresa

  • cancerx6
    cancerx6 Member Posts: 25
    Ingrid K said:

    Tongue Cancer Survivor Here**

    Theresa:

    I CAN RELATE !!   I am a 3 year tongue cancer survivor and doing pretty darn good.

    I had 75% of my oral tongue removed and replaced with a "hunk" of skin, tissue, artery from my forarm, just like they are prescribing for you.

    The surgery sounds way more barbaric than it really was.  After surgery, I went through 30 rounds of radiation therapy.  The surgery was difficult but doable.  It was actually easier than the 30 rounds of treatment.  It sounds like you may have been through chemo and/or radiation before.

    I also am sending you a private message.

    Contact me directly if I can help further...

    But you can do this...after all you have been through, you can do this for sure.

    Ingrid

     

     

    Ingrid,
    I just responded to

    Ingrid,

    I just responded to your private message.  Yes, my first tongue cancer in 2008 was treated with chemo and 30 rounds of radiation therapy.  I was told I cold have more chemo but never radiation again in that area.  I don't know what the surgery will be like, but the radiation was a nightmare for me as well!  Thak you so much for the encouragement.  I think you will be hearing a lot from me in the near future.  

    Be well,

    Theresa

  • cancerx6
    cancerx6 Member Posts: 25
    jim and i said:

    Wow you have been through the

    Wow you have been through the mill haven't you. My husband had base of tongue cancer but no surgery so I can't advise you on the surgery part. I just want you to know that I am praying all goes well for you.

    Debbie

    Thanks Debbie.  I hope you

    Thanks Debbie.  I hope you and your husband are doing well.  Cancer and I are on a first name basis and I'm not so happy about that!  Thanks for the prayers.  It means so much to me!

    Theresa

  • hwt
    hwt Member Posts: 2,328 Member
    cancerx6 said:

    Ingrid,
    I just responded to

    Ingrid,

    I just responded to your private message.  Yes, my first tongue cancer in 2008 was treated with chemo and 30 rounds of radiation therapy.  I was told I cold have more chemo but never radiation again in that area.  I don't know what the surgery will be like, but the radiation was a nightmare for me as well!  Thak you so much for the encouragement.  I think you will be hearing a lot from me in the near future.  

    Be well,

    Theresa

    Theresa

    My cancer was of the lower jaw early 2012. Surgery followed by chemo & rads. Returned around carotid artery 15 mos. later. My brother's doctor at Mayo said "don't let them tell her she can't be radiated twice". I had SBRT (a pinpoint radiation) 08/13 and tumor disappeared. Got another on opposite side, chemo and more SBRT 04/2014. Am in the wait and see mode right now. SBRT is not an option for everyone but there is now proton therapy and other things. My advice is that once you get your final dx, do your homework with a 2nd opinion for best options. Hopefully, the surgery will be enough for your situation.

  • cancerx6
    cancerx6 Member Posts: 25
    hwt said:

    Theresa

    My cancer was of the lower jaw early 2012. Surgery followed by chemo & rads. Returned around carotid artery 15 mos. later. My brother's doctor at Mayo said "don't let them tell her she can't be radiated twice". I had SBRT (a pinpoint radiation) 08/13 and tumor disappeared. Got another on opposite side, chemo and more SBRT 04/2014. Am in the wait and see mode right now. SBRT is not an option for everyone but there is now proton therapy and other things. My advice is that once you get your final dx, do your homework with a 2nd opinion for best options. Hopefully, the surgery will be enough for your situation.

    That is great to know!  I

    That is great to know!  I like to have as many options open as possible!  I will have my fingers working double time to see what I can find available to me and have been thinking about a second opinion as well.

    Thank you so much and I hope your day is happy and pain free!

  • thennies61
    thennies61 Member Posts: 285
    cancerx6 said:

    That is great to know!  I

    That is great to know!  I like to have as many options open as possible!  I will have my fingers working double time to see what I can find available to me and have been thinking about a second opinion as well.

    Thank you so much and I hope your day is happy and pain free!

    In January had almost 3/4 of

    In January had almost 3/4 of tounge removed and they took muscle from my thigh and replaced it.Called a tounge flap.Just did 30 rounds of radiation and still going though the last of the drugs.I did start to go to a speach specilast whisch she also is helping with the new swollowing.It is going slow but sure.They put in a trach tube and also peg tube which both is helping alot,Hopfully the trach gets pulled in a couple of weeks as it help with both speach and eating.They removed all my teeth during the opration and doctor is sending to a denist that will make up a customised set to help chew and swollow easier.

  • Goyca
    Goyca Member Posts: 220
    a lot

    Theresa, you have been through a lot. such a hero :)

    Keep going forward, my prayers with you concerning the big surgery. Hope you wont feel much pain.

     

    Goyca.

  • cancerx6
    cancerx6 Member Posts: 25

    In January had almost 3/4 of

    In January had almost 3/4 of tounge removed and they took muscle from my thigh and replaced it.Called a tounge flap.Just did 30 rounds of radiation and still going though the last of the drugs.I did start to go to a speach specilast whisch she also is helping with the new swollowing.It is going slow but sure.They put in a trach tube and also peg tube which both is helping alot,Hopfully the trach gets pulled in a couple of weeks as it help with both speach and eating.They removed all my teeth during the opration and doctor is sending to a denist that will make up a customised set to help chew and swollow easier.

    Thank You

    Thank you so much for the information.  These facts are what I need to try to get myself prepared for what is to come.  I had chemo and radiation when I was first diagnosed with tongue cancer in 2008 - not much fun!  I fear so much - especially the thought of a trach tube.  Is it difficult to get used to it?  Is it in your throat or through your nose?  Sorry for the many questions but I am afraid of frightening my 20 month old grandson with things sticking out of me!  I had a peg for 10 months in 2008 so that will probably have to be done again.  I also had all my teeth removed befor my radiation treatments and then had the tongue attached to the floor of my mouth so they said dentures wouldn't be possible.  Maybe now I can have something done!  Sorry for the rambling but I'm waiting for my grandson to arrive.  I babysit today!  He is the light of my life.  I hope to speak with you soon.  Wishing you well and hope they get rid of the trach soon!

  • cancerx6
    cancerx6 Member Posts: 25
    Goyca said:

    a lot

    Theresa, you have been through a lot. such a hero :)

    Keep going forward, my prayers with you concerning the big surgery. Hope you wont feel much pain.

     

    Goyca.

    Prayers

    Thanks so much for the prayers.  They will get me through this!  I hope you are having a wonderful day!

  • thennies61
    thennies61 Member Posts: 285
    cancerx6 said:

    Thank You

    Thank you so much for the information.  These facts are what I need to try to get myself prepared for what is to come.  I had chemo and radiation when I was first diagnosed with tongue cancer in 2008 - not much fun!  I fear so much - especially the thought of a trach tube.  Is it difficult to get used to it?  Is it in your throat or through your nose?  Sorry for the many questions but I am afraid of frightening my 20 month old grandson with things sticking out of me!  I had a peg for 10 months in 2008 so that will probably have to be done again.  I also had all my teeth removed befor my radiation treatments and then had the tongue attached to the floor of my mouth so they said dentures wouldn't be possible.  Maybe now I can have something done!  Sorry for the rambling but I'm waiting for my grandson to arrive.  I babysit today!  He is the light of my life.  I hope to speak with you soon.  Wishing you well and hope they get rid of the trach soon!

    I also have my tounge

    I also have my tounge attacted to the floor of mout.Doctor tols me he going to send to a denist that will make me cuctomized upper teeth.Hewill make so the top is alittle to help my tounge get food down.You will surprized what they can do.As far as the trach Not sure if you ever get use to get but you do learn to put up with it.The hardest part for me was learn to learn how to use the suction machine.Then when I did couldn't figure out why I made it so hard on myself.And does help though the healing process.

  • cancerx6
    cancerx6 Member Posts: 25

    I also have my tounge

    I also have my tounge attacted to the floor of mout.Doctor tols me he going to send to a denist that will make me cuctomized upper teeth.Hewill make so the top is alittle to help my tounge get food down.You will surprized what they can do.As far as the trach Not sure if you ever get use to get but you do learn to put up with it.The hardest part for me was learn to learn how to use the suction machine.Then when I did couldn't figure out why I made it so hard on myself.And does help though the healing process.

    Food for Thought

    You certainly gave me a lot to think about!  I am going to inquire about seeing a dentist who could help me get food down.  I would love a piece of pizza!  Haven't had one since 2008!  As for the trach, I will think of your words as I deal with it.  You truly are making me think that I can do this!  Thank you so much for taking the time to make this old lady feel better about the road ahead.

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    You are the definition

    of SURVIVOR!  God gives his hardest battles to His toughest warriors!  I'm sorry you have had to fight this monster so many times.  Many prayers for a complete healing!!

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    University of Chicago medical center

    Google the chef who had aggressive tongue cancer. And was treated there. They spared is tongue. Rads and chemo and he is doing well

    best to you with our prayers

  • cancerx6
    cancerx6 Member Posts: 25

    You are the definition

    of SURVIVOR!  God gives his hardest battles to His toughest warriors!  I'm sorry you have had to fight this monster so many times.  Many prayers for a complete healing!!

    I am among so many warriors!

    I am among so many warriors!  We all fight the hard fight and would love to see the monster defeated in our lifetime!  Thanks for the prayers!  They are our salvation!!!!!

  • cancerx6
    cancerx6 Member Posts: 25
    Bunnymom said:

    University of Chicago medical center

    Google the chef who had aggressive tongue cancer. And was treated there. They spared is tongue. Rads and chemo and he is doing well

    best to you with our prayers

    Thanks for the advice.  I

    Thanks for the advice.  I will do that.  Thanks so very, very much for the prayers!

  • cancerx6
    cancerx6 Member Posts: 25
    I Have Received a Miracle!

    I can't believe I am able to say this but it is so true!  I saw the ENT oncologist yesterday about the result of my tongue biopsy and CT.  The biopsy was negative - first time that has happened since the tongue cancer started and the CT was clear as well.  The doctor is not convinced there isn't cancer somewhere in my tongue.  However, he is treating me for 14 days for a fungal infection because I am having a great deal of pain in my tongue and ear.  I see him in 2 weeks and if I am still in pain he will do another biopsy and most likely an MRI.  I will deal with that when I have to!  I feel like I am the luckiest old lady on the planet!  Thank you so much for your support and I wish each and every one of you a doctor's visit like I had yesterday.  I can't seem to stop smiling!!!!!!!!!!

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    cancerx6 said:

    I Have Received a Miracle!

    I can't believe I am able to say this but it is so true!  I saw the ENT oncologist yesterday about the result of my tongue biopsy and CT.  The biopsy was negative - first time that has happened since the tongue cancer started and the CT was clear as well.  The doctor is not convinced there isn't cancer somewhere in my tongue.  However, he is treating me for 14 days for a fungal infection because I am having a great deal of pain in my tongue and ear.  I see him in 2 weeks and if I am still in pain he will do another biopsy and most likely an MRI.  I will deal with that when I have to!  I feel like I am the luckiest old lady on the planet!  Thank you so much for your support and I wish each and every one of you a doctor's visit like I had yesterday.  I can't seem to stop smiling!!!!!!!!!!

    cancerx6, that is

    cancerx6, that is FANTASTIC!!!  i'm doing a happy, happy dance for you right now.  thank you for sharing this wonderful good news!  live on, friend, and keep smiling!!!!!!!!!!!!!!!!!!!!

    God bless you,

    dj