Precancerous lesion

Lorikat
Lorikat Member Posts: 681 Member
in Head and Neck Cancer #1

I hope someone can give me some hope.  I October of 2016 I had two surgeries to remove precancerous lesion from my tongue.  (did not get clear margins first time)

i don't know (nor do doctors) why it still hurts.  All the time.  I have been to a dental surgeon and to an ENT.  It has now been almost 11 months and everyday is burning pain.  Any idea about a different kind of doctor?  Pain meds just put me to sleep and I still wake up hurting...  any ideas any one?  Please?

Comments

  • Tonita
    Tonita Member Posts: 197 Member
    edited August 2017 #2
    Is there a possibility that

    Is there a possibility that your teeth are causing this?  I had a tumor removed from my tongue over a year ago and although it doesn't hurt on the surgery site, my tongue is no longer the way it was in shape.  My tongue is constantly in pain or burning and right now I have an open sore on it.  I think I may have to have my teeth filed down because I am really SO tired of this.

  • Lorikat
    Lorikat Member Posts: 681 Member
    #3
    Tonita said:

    Is there a possibility that

    Is there a possibility that your teeth are causing this?  I had a tumor removed from my tongue over a year ago and although it doesn't hurt on the surgery site, my tongue is no longer the way it was in shape.  My tongue is constantly in pain or burning and right now I have an open sore on it.  I think I may have to have my teeth filed down because I am really SO tired of this.

    this sounds so much like me..

    this sounds so much like me...

      I went to the dentist and had the inside of my teeth smoothed out hoping it would help my tongue....i didn't.  I am so tired of the burning and hurting sometimes I just cry.  And I'm tired of soup!  Even bread hurts my tongue!  Do you see an oncologist?

     

  • Tonita
    Tonita Member Posts: 197 Member
    #4
    Lorikat said:

    this sounds so much like me..

    this sounds so much like me...

      I went to the dentist and had the inside of my teeth smoothed out hoping it would help my tongue....i didn't.  I am so tired of the burning and hurting sometimes I just cry.  And I'm tired of soup!  Even bread hurts my tongue!  Do you see an oncologist?

     

    No, I didn't and never did. 

    No, I didn't and never did.  They removed the tumor and there was no lymph node involvement and it didn't spread.  The doctors say it will get better in time but it's getting worse as far as I'm concerned.  I went to have this lesion looked at and was sent home with something topical but it doesn't hel p.  Yes, I have horrible burning and by the end of the day, I've had it.  The only thing that provides any relieve is something that I just did myself.  I take a small water bottle, 20 oz or so and fill it with water and dissolve about 7 - 8 aspirin and then I "soak" my mouth with it.  I just take a swig and hold it in there until the pain stops.  It's temporary relief but relief nonetheless.

  • Lorikat
    Lorikat Member Posts: 681 Member
    #5
    Tonita said:

    No, I didn't and never did. 

    No, I didn't and never did.  They removed the tumor and there was no lymph node involvement and it didn't spread.  The doctors say it will get better in time but it's getting worse as far as I'm concerned.  I went to have this lesion looked at and was sent home with something topical but it doesn't hel p.  Yes, I have horrible burning and by the end of the day, I've had it.  The only thing that provides any relieve is something that I just did myself.  I take a small water bottle, 20 oz or so and fill it with water and dissolve about 7 - 8 aspirin and then I "soak" my mouth with it.  I just take a swig and hold it in there until the pain stops.  It's temporary relief but relief nonetheless.

    any relief is better than

    any relief is better than none for sure.  I went to see the ENT the other day and he said he didn't know what to do...   I sat in my car in the parking lot and cried..I am a two time cancer survivor, chemo and radiation....  but this really depresses me.  

  • Lorikat
    Lorikat Member Posts: 681 Member
    #6
    Tonita said:

    Is there a possibility that

    Is there a possibility that your teeth are causing this?  I had a tumor removed from my tongue over a year ago and although it doesn't hurt on the surgery site, my tongue is no longer the way it was in shape.  My tongue is constantly in pain or burning and right now I have an open sore on it.  I think I may have to have my teeth filed down because I am really SO tired of this.

    os!

     

     

  • Tonita
    Tonita Member Posts: 197 Member
    #7
    I know how you feel. 

    I know how you feel. 

  • Lorikat
    Lorikat Member Posts: 681 Member
    edited August 2017 #8
    so where do we go from here??

    so where do we go from here???????

  • Tonita
    Tonita Member Posts: 197 Member
    #9
    For me?  I have a follow up

    For me?  I have a follow up on the 31st.  I'm thinking that I will have to have some teeth filed down.  I can't think of anythng else short of just pulling them.  I was also told it would get better with time but it's getting worse.

  • caregiver wife
    caregiver wife Member Posts: 234
    #10
    From an old granny who has suffered with chronic pain

    Alert!! Not to be done against medical advice!!  The mouth and teeth are full of nerves.  For me, pain starts in one place and they all get excited.  So, you need to try to break the pain cycle.

    I like Tonita's aspirin suggestion.  In the old days, they did that for tooth ache.  

    Have you tried an over the counter like Anbesol?? It might work long enough that you could eat a meal, or fall asleep.

    If the teeth are rubbing on tender spot, have you tried half a cotton ball between teeth and tongue, just to give the tongue a rest for a short while?

    An old doctor once told my sister to rub brandy on baby's gums for teething pain.  We used peach brandy, only took a drop, and it worked.

    Severed nerve pain does get better over time.  

    As a chronic pain sufferer, you both have all my sympathies!!

    Best Wishes,

    Crystal

  • Lorikat
    Lorikat Member Posts: 681 Member
    #11
    caregiver wife said:

    From an old granny who has suffered with chronic pain

    Alert!! Not to be done against medical advice!!  The mouth and teeth are full of nerves.  For me, pain starts in one place and they all get excited.  So, you need to try to break the pain cycle.

    I like Tonita's aspirin suggestion.  In the old days, they did that for tooth ache.  

    Have you tried an over the counter like Anbesol?? It might work long enough that you could eat a meal, or fall asleep.

    If the teeth are rubbing on tender spot, have you tried half a cotton ball between teeth and tongue, just to give the tongue a rest for a short while?

    An old doctor once told my sister to rub brandy on baby's gums for teething pain.  We used peach brandy, only took a drop, and it worked.

    Severed nerve pain does get better over time.  

    As a chronic pain sufferer, you both have all my sympathies!!

    Best Wishes,

    Crystal

    I'm an old Granny myself LOL!

    I'm an old Granny myself LOL!  I sure hope the pain goes away.....

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