What's going on with my tongue???

FRONT AND CENTER
FRONT AND CENTER Member Posts: 29
in Head and Neck Cancer #1

Hi everyone!  My name is Kelly and my cancer (Sqaumous cell carcinoma) started on my tongue.  It spread to lymph nodes and I've had bilateral neck dissection, chemo and radiation.  My last "sunshine hour" was on Valentine's Day and I've been slowly getting better.  I'm so glad I found this support group because I feel so alone with this condition.
The reason I'm writing is about my tongue.  Sometimes it tingles all over, sometimes it feels like a foreign object in my mouth and sometimes it feels like I'm talking with a mouthful of marbles.  What's going on with my tongue?  Is it nerve re-growth?  How long does this last or is this forever?

I did not do the tongue resection.  Did anyone do that?  There are so many questions, some I should have asked before treatment retrospect is 20/20.

 

Thank you for any insight you can give me.

Kelly

Comments

  • PJ47
    PJ47 Member Posts: 376
    #2
    Welcome Kelly

    I had my primary tumor on the base of my tongue and 1 lymph node on my neck.  I had the TORS on the base of tongue and left neck dissection and they thpught I would not need further treatment however the final path report showed a small area of extracapsular spread so I had 30 radiation treatments.  My tongue sttill feels wierd 4 1/2 mos following rads (ended Dec. 27).   My taste buds are about 70% back and saliva about 50%.  Since part of the base of my tongue was removed, I sometimes choke on things as it is lopsided in the back and has to compensate. Yes I believe that nerves are regrowing and it is hard to talk well withour saliva.  The sides of my tongue still feel numb especially on the side where I had more radiation.  I have hairy tongue and fissures on the tongue from rads.  It is a sensative organ but does regenerate cells quickly.  Glad you found this site, you will have support and insight from the group,

    Best to you,

    PJ

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #3
    kelly, my cancer was of the

    kelly, my cancer was of the larynx so i'm not familiar with your type but wanted to say welcome to the family.  i'm sorry you need to be here but very happy you found us.  we will be here for you any time you need something.  you are NOT alone.  there are several here who have been thru that type of cancer and will be able to relate and provide their perspective.  i hope you will hang around.  i'm sure others will chime in to offer their help.

    God bless you,

    dj

  • donfoo
    donfoo Member Posts: 1,773 Member
    #4
    welcome

    hi,

    Welcome to CSN. Great place, lots of knowledge here. Generally, tongue nerve issues are common when there is surgery on the tongue which it seems you had surgery in the nodes. Nerves do travel all over so is seems reasonable the surgery distirbued some that related to your tongue. Get to the doctor to get it checked out. If you don't get a satisfactory explanation, go see another. You are at an excellent facility. Good luck Don

  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
    Hi Kelly

    I am NPC so I will let someone else that had tongue C talk to you about your problem. I just want to welcome you to the CSN H&N family

     

    Hondo

  • jwilli
    jwilli Member Posts: 9
    #6
    Tongue

    Hi Kelly,

    Two years ago, I had 2/3 of my tongue removed and then rebuilt with a flap. It is still impossibe for me to use my tongue when I eat. I can eat soft food and don't need a PEG or feeding tube.  I am very thankful for that. It is hard to speak as clearly as before too. My tongue feels like a foreign object in my mouth. However, I always try to keep things in perspective.....It is what it is. The tingling is still there..perhpas forever???? I don;t know. I no longer have any saliva so must drink a lot with my meals.

    As for feeling you should have asked more questions...we all think that...but we didn't know what was in store for us so knowing which questions to ask would have been impossible.

    How much of your tongue did you have removed and what was done if not ressection???

    Good luck,Kelly, and know you are not alone.I always tell myself that no matter what, there are so many on this site who are suffering so much...Ii think of them and realize as bad as I sometimes feel, I am one of the lucky ones.

    Take care and be strong....who caresif  your speech isn't what it was! Mine isn't either but at least I still have a voice.

  • thennies61
    thennies61 Member Posts: 285
    #7
    jwilli said:

    Tongue

    Hi Kelly,

    Two years ago, I had 2/3 of my tongue removed and then rebuilt with a flap. It is still impossibe for me to use my tongue when I eat. I can eat soft food and don't need a PEG or feeding tube.  I am very thankful for that. It is hard to speak as clearly as before too. My tongue feels like a foreign object in my mouth. However, I always try to keep things in perspective.....It is what it is. The tingling is still there..perhpas forever???? I don;t know. I no longer have any saliva so must drink a lot with my meals.

    As for feeling you should have asked more questions...we all think that...but we didn't know what was in store for us so knowing which questions to ask would have been impossible.

    How much of your tongue did you have removed and what was done if not ressection???

    Good luck,Kelly, and know you are not alone.I always tell myself that no matter what, there are so many on this site who are suffering so much...Ii think of them and realize as bad as I sometimes feel, I am one of the lucky ones.

    Take care and be strong....who caresif  your speech isn't what it was! Mine isn't either but at least I still have a voice.

    Hi Kelly
    Like jwilli I had

    Hi Kelly

    Like jwilli I had around 2/3 of tounge removed and rebuilt with a flap from my thigh.I'm still going though radiation and drugs about two weeks left.I do feel my tounge tingle sometimes.My speach specialist says it is the nerves healling.Am eating soft foods and some meats before radiation if I mash them down.Speach isn't as good as I want it seems mine is different as I start to talk my mouth fills up with slivia and start to mumble alittle.Have trouble with certain letters but have been working on it.And as jwilli says it is what it is.Need to go forward in a positive way to the new normal.

  • FRONT AND CENTER
    FRONT AND CENTER Member Posts: 29
    #8
    PJ47 said:

    Welcome Kelly

    I had my primary tumor on the base of my tongue and 1 lymph node on my neck.  I had the TORS on the base of tongue and left neck dissection and they thpught I would not need further treatment however the final path report showed a small area of extracapsular spread so I had 30 radiation treatments.  My tongue sttill feels wierd 4 1/2 mos following rads (ended Dec. 27).   My taste buds are about 70% back and saliva about 50%.  Since part of the base of my tongue was removed, I sometimes choke on things as it is lopsided in the back and has to compensate. Yes I believe that nerves are regrowing and it is hard to talk well withour saliva.  The sides of my tongue still feel numb especially on the side where I had more radiation.  I have hairy tongue and fissures on the tongue from rads.  It is a sensative organ but does regenerate cells quickly.  Glad you found this site, you will have support and insight from the group,

    Best to you,

    PJ

    Thank you for your responses!

    I am so happy I found this site!  I haven 't found any support groups in my area and there is no way family/friends understand what I'm going through, no matter how hard they try.  Reading the responses made me smile b/c I can relate to every word; we've all been through and are struggling with the same issues.  Thank you!

     

    PJ, you described it best as "hairy tongue".  That's what bothers me the most sometimes.  It reminds me of the horrific days of treatment but thankfully, it doesn't last as long.  It's that "hairy" feeling in the back of your throat.  I was calling it fuzzy but "hairy" really describes it. 

    Your percentages are right on...I am a public speaker for a living and I keep forgetting that I don't make salivia.  Or is it I keep remembering that I need water?  NEW NORMAL....

     

    Yesterday my tongue wasn't working.  At all.  I felt like I was slurring every word and I was talking with a mouthful of marbles.  It's times like this I don't want to talk.  It hurts.  It's bothersome.  Does this pass or is this the new normal?

     

    I thank everyone for your feedback! It helps so much to hear your story and how you deal with the same struggles.   Cool

    Kelly

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #9
    Kelly

    hi Kelly 

    I had a tongue leison removed in September 2013, clear margins followed by a neck dissection, no lymph node involvement in October 2013. January 2024 PET CT showed a single node. Had another neck dissection to remove noded and submandular gland All margins clear.  April PET CT showed a tumor between my throat and tongue. Just had surgery on Wednesday to remove tumor. 

    Now I have to go to the tumor board (rad oncologist, med oncologist and surgeon) to discuss further treatment options. I know that what's coming is radiation and chemo and I'm scared out of my mind. 

     

    Single mom with 13 year old. Just trying to get through all of this and get my life back. thanks for your posts. I have read all of them. You have a good spirit and I wish you well. 

     

    BunnyMom

  • FRONT AND CENTER
    FRONT AND CENTER Member Posts: 29
    #10
    Bunnymom said:

    Kelly

    hi Kelly 

    I had a tongue leison removed in September 2013, clear margins followed by a neck dissection, no lymph node involvement in October 2013. January 2024 PET CT showed a single node. Had another neck dissection to remove noded and submandular gland All margins clear.  April PET CT showed a tumor between my throat and tongue. Just had surgery on Wednesday to remove tumor. 

    Now I have to go to the tumor board (rad oncologist, med oncologist and surgeon) to discuss further treatment options. I know that what's coming is radiation and chemo and I'm scared out of my mind. 

     

    Single mom with 13 year old. Just trying to get through all of this and get my life back. thanks for your posts. I have read all of them. You have a good spirit and I wish you well. 

     

    BunnyMom

    I am amazed...

    We have all been diagnosed with the same thing but the treatment options are as different as each one of us is different!  I wish each and everyone on here the best of health and comfort during the tough times.  Smile

    BunnyMom, hang in there!  I opted for surgical removal ONLY of tongue lesion but this cancer is aggressive!  One of my docs said this cancer is a "surgical" cancer and needs to be removed but he also said that the best response is surgery, chemo AND radiation. 

    I was also scared to death of treatment.  I had heard horror stories and built it up in my mind to be horrific (Don't read the internet).  Also, don't be afraid of radiation or chemo.   They have excellent anti-nausea drugs that made my chemo tolerable.  (I did 4 weeks of Cisplatin; 2 on, one off, 2 on...thank God).

    As for radiation, you may NOT get mouth sores.  If your docs think chemo/rad is needed, try that swish I list on my profile and take it one day at a time.... 

    With the support of your family here, you are not alone and you will make it through! 

    Kelly

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #11
    My tongue feels weird too!!!

     

    Kelly,

    I am just over 2 years post from stage IVa, scc, bot, 1 lymph node, hpv+ (surgery rads & Erbitux).  I have a fair amount of saliva and taste and can eat most anything I want to.

    In some ways my tongue feels like it did during rads.  Sometimes a piece of food seems to sit at the base of my tongue and I can cough it up an hour after eating.  The sides of my tongue (between my teeth) feels slightly numb.  I can have a mouth full of saliva and still have dry mouth (go figure).  I think it is just the weird feel of my tongue.  I talk ok, but I prefer not to talk and I get tired of talking. 

    BUT, I continue to get better in most areas.

    Matt

    Tongue Out

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