Updating my Update

cancerx6
cancerx6 Member Posts: 25
in Head and Neck Cancer #1

Quick recap of my past posts - saw the ENT oncologist because of pain in my tongue and ear. First, because of past history of chemo, radiation and 3 surgeries on the tongue, doc felt I needed most of my tongue removed and rebuilt with tissue from my arm or neck.  He did a biopsy and a CT and both came back negative.  Next step was a PET/CT and 2 more biopsies with the possibility of antibody treatment (thanks for all the info on that).  Well, the biopsies came back negative again but the PET/CT showed 'something' in the tongue.  Through all this I am having intense pain in my tongue and ear.  I am on a Fentanyl patch and roxicet for break-through pain.  I saw the doctor yesterday and he doubled the dose of the patch but it still isn't helping.  The newest plan is that I am having exploratory surgery on my tongue on June 23.  THe doctor will 'slice it open', check it out and biopsy anything that doesn't look right.  Sounds like such fun!  I am in pain, unable to take care of my adorable 21 month old grandson, I can't cook or eat - which I love to do, I can't clean - which I don't mind not doing and just frustrated beyond words.  I can deal with anything that comes my way but this uncertainty is killing me!  Sorry for the vent but who better to understand how I feel than all of you!  Please be well and thanks in advance for all your encouragement!

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Vent away....

    One of our greatest assets here, is the ability to listen.....you know we're hearing you.  Good luck on your surgery.....I hope they find a reason for your pain, and it's NOT cancer!!!

    p

  • cancerx6
    cancerx6 Member Posts: 25
    #3
    phrannie51 said:

    Vent away....

    One of our greatest assets here, is the ability to listen.....you know we're hearing you.  Good luck on your surgery.....I hope they find a reason for your pain, and it's NOT cancer!!!

    p

    From your lips to God's ear!

    From your lips to God's ear!  With a smile on my face I'm taking my heating pad and heading to bed!  Thank you!!!!!!!!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
    vent, vent, vent till you are satisfied

    cancerx6,

    You say you don’t mind cleaning, well I have a big………LOL.

    Good luck solving the mystery, I like to hear negative reports

    Matt

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    we don't mind venting at

    we don't mind venting at all!  we all feel the same about uncertainty.  we don't do well with it.  i'm sorry you are going thru this.  will keep you in my prayers and definitely praying it is NOT cancer.

    God bless you,

    dj

  • donfoo
    donfoo Member Posts: 1,771 Member
    #6
    Uncertainty and waiting are the worst

    Sorry to hear about the wait to learn more. Sometimes the delays and uncertaintly are unavoidable, Only thing I can offer is the old saying, "it ain't cancer until proven". In fact, given all the test done, it seems likely it is NOT cancer. The upcoming procedure should find the root problem but if it was cancer it would have showed up by now. I'm no doctor but just going on what I have seen here.

    As to the pain, fentanyl patches are offered in different strengths. Pain is something that can be controlled. At some point it becomes a delicate balance between pain control and ability to properly carry on. Since your wait is a bit off, you should at least contact the prescribing doctor and discuss further options to relieve the pain. Good luck, don

  • cancerx6
    cancerx6 Member Posts: 25
    #7
    CivilMatt said:

    vent, vent, vent till you are satisfied

    cancerx6,

    You say you don’t mind cleaning, well I have a big………LOL.

    Good luck solving the mystery, I like to hear negative reports

    Matt

    i agree, Matt.  Negative

    i agree, Matt.  Negative reports are music to my ears!  As for cleaning, not my favorite thing to do but I like to see the results of my efforts!  Thanks for the good wishes and hope all is well with you!

     

  • cancerx6
    cancerx6 Member Posts: 25
    #8
    debbiejeanne said:

    we don't mind venting at

    we don't mind venting at all!  we all feel the same about uncertainty.  we don't do well with it.  i'm sorry you are going thru this.  will keep you in my prayers and definitely praying it is NOT cancer.

    God bless you,

    dj

    Sending God's blessings to

    Sending God's blessings to you as well!  We certainly need His help!  Thanks for listening!

  • cancerx6
    cancerx6 Member Posts: 25
    #9
    donfoo said:

    Uncertainty and waiting are the worst

    Sorry to hear about the wait to learn more. Sometimes the delays and uncertaintly are unavoidable, Only thing I can offer is the old saying, "it ain't cancer until proven". In fact, given all the test done, it seems likely it is NOT cancer. The upcoming procedure should find the root problem but if it was cancer it would have showed up by now. I'm no doctor but just going on what I have seen here.

    As to the pain, fentanyl patches are offered in different strengths. Pain is something that can be controlled. At some point it becomes a delicate balance between pain control and ability to properly carry on. Since your wait is a bit off, you should at least contact the prescribing doctor and discuss further options to relieve the pain. Good luck, don

    You really understand how I

    You really understand how I feel, Don.  That is such a comfort!  I am feeling that there is a good chance this is not cancer as well and hope we are both right.  

     

    I see my ENT Monday before my pre-op exam and will certainly let him know what is going on.  Thanks for your thoughts and understanding.  Wishing you the best as well!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #10
    cancerx6 said:

    i agree, Matt.  Negative

    i agree, Matt.  Negative reports are music to my ears!  As for cleaning, not my favorite thing to do but I like to see the results of my efforts!  Thanks for the good wishes and hope all is well with you!

     

    all will be fine

    Cx6,

     All is well with me, I went on 5 garden tours today, I ate some Blueberries (the bushes are full) and I am going to install a pull out shelf under the utility room sink, next.

    I love a clean yard and a clean house.

    Matt

  • patricke
    patricke Member Posts: 570
    #11
    VENT ON

    This is the place to vent, so I'm glad you are sharing; you are going through an awful experience, to say the least.  I'm so sorry that you are having these scary symptoms, and have to go to the surgical suite again.  I'm hoping that the doc finds some benign issue that is causing the pain.  I send you all of the best wishes, thoughts, hopes, and prayers for a NED outcome.  

    PATRICK

  • cancerx6
    cancerx6 Member Posts: 25
    #12
    Had Surgery Yesterday

    I had my exploratory surgery yesterday.  All went well.  The doctor didn't see any signs of cancer but just scar tissue.  I will get the results of the biopsies within a week.  He still doesn't know why I am in so much pain and can't eat.  As someone wise on this board said - it isn't cancer until they say it is cancer!  Still trying to down my first Ensure of the day - started it about 9 hours ago!  Soon I will give up and just go back to sleep.  Hoping you are all doing well!

  • hwt
    hwt Member Posts: 2,328 Member
    #13
    cancerx6 said:

    Had Surgery Yesterday

    I had my exploratory surgery yesterday.  All went well.  The doctor didn't see any signs of cancer but just scar tissue.  I will get the results of the biopsies within a week.  He still doesn't know why I am in so much pain and can't eat.  As someone wise on this board said - it isn't cancer until they say it is cancer!  Still trying to down my first Ensure of the day - started it about 9 hours ago!  Soon I will give up and just go back to sleep.  Hoping you are all doing well!

    Cancer x6

    Glad nothing was found but also know that pain w/o a solution is frustrating. Stay hydrated and keep those Ensures going in. Hopefully, you will find a cause and resolution soon.

  • cancerx6
    cancerx6 Member Posts: 25
    #14
    hwt said:

    Cancer x6

    Glad nothing was found but also know that pain w/o a solution is frustrating. Stay hydrated and keep those Ensures going in. Hopefully, you will find a cause and resolution soon.

    Thanks!  Hoping for some good

    Thanks!  Hoping for some good news soon!

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