FROM NED LAST WEEK TO A NERVOUS WRECK TODAY

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boardwalkgirl
boardwalkgirl Member Posts: 269
in Head and Neck Cancer #1

Went to see ENT today thinking it was just going to be routine visit since I had just got a NED from my cat scan last week from the radiation oncologist. ENT doesn't like the looks of the right side of the thyroid on the cat scan, says it is larger than the left side. Had an ultrasound today.He discussed all the kinds of thyroid cancer but I think I was so stunned that I didn't hear half of what he said. Any one else have any thing like this come up. I am 22 months out of treatment. Hoping to hear something tomorrow.

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  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
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    Oh honey! Nothing like

    getting dropped off a cliff to take your breath away....my heart sunk.  Then I remembered.....it ain't cancer till they say it's cancer....and he may have "discussed" thyroid cancer, but he doesn't know it.....so hold tight. 

    Tucking you into my pocket, holding you close in my heart.....sending prayers and positive thoughts.....you may just have a weird thryroid from all the zapping you took!

    p

  • Guzzle
    Guzzle Member Posts: 710
    #3
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    phrannie51 said:

    Oh honey! Nothing like

    getting dropped off a cliff to take your breath away....my heart sunk.  Then I remembered.....it ain't cancer till they say it's cancer....and he may have "discussed" thyroid cancer, but he doesn't know it.....so hold tight. 

    Tucking you into my pocket, holding you close in my heart.....sending prayers and positive thoughts.....you may just have a weird thryroid from all the zapping you took!

    p

    thinking of you

    And hoping its OK. G

  • jim and i
    jim and i Member Posts: 1,788 Member
    #4
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    So sorry to hear this. I,

    So sorry to hear this. I, like you, do not understand how the oncologist read NED and ENT didn't. I gues the ENT has seen a lot of thyroid cancer and the oncologist a big variety. But the radiologist missed it too! You are definately in my prayers. Jump on it and be agressive. Praying for good outcome and your comfort during this ordeal.

    Debbie

     

  • hwt
    hwt Member Posts: 2,328 Member
    #5
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    jim and i said:

    So sorry to hear this. I,

    So sorry to hear this. I, like you, do not understand how the oncologist read NED and ENT didn't. I gues the ENT has seen a lot of thyroid cancer and the oncologist a big variety. But the radiologist missed it too! You are definately in my prayers. Jump on it and be agressive. Praying for good outcome and your comfort during this ordeal.

    Debbie

     

    Hate to hear

    Prayers that this is nothing. Thinking positive thoughts for you. One would have thought they would have made mention in the original report with scan results. Having said that, things have been missed in the written reports from my scans. Thus, the reason I've had to run to the Fed-Ex office 3 times within the last 6 days to send actual discs to Mayo. The doctors there like to read the scans themselves and not rely on the written copies.

    Hoping ENT just covering all his bases to be on the safe side. I am dealing with same anxiety but for opposite reason, my scan report says "could be suspect" and ONC says not necessarily so. I had another CT this morning with results tomorrow. 

    Certainly wishing you good results. If that isn't the case, the thyroid seems to be an issue on this forum so you will get lots of support.

    Candi

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #6
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    bwg, i'm sorry your

    bwg, i'm sorry your excitement was short lived.  i don't blame you for being scared but it may be what P said, your tyroid is acting strange from being zapped.  i am keeping you in my prayers and praying that it is not cancer.  please let us know what you find out.  we are here for you.

    God bless you,

    dj

  • jcortney
    jcortney Member Posts: 503
    #7
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    Hopefully Not Like Me

    Same chapter, different verse.  My MedOnc & ENT didn't like my thyroid on the CT either.  Ordered an ultrasound which was "inconclusive".   My ENT said "get the half out", so into surgery we went.  Pathologist in the OR found malignant cells but were not Thyroid cancer cells.  Pathology after surgery showed P16 SQ.  Another surgery later, minus the rest of my thyroid and 20+ lymph nodes we found SQ in three nodes.  This was a recurrence of my BOT P16 that was NED only three months ago.  I'm now 20 months out of treatment and just restarted chemo.

    I wish you better luck BUT YOU MUST get it completely checked out, needle biopsy or other testing is paramount, you don't want it to spread.

    Joe

  • donfoo
    donfoo Member Posts: 1,771 Member
    #8
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    what's up....

    My assumption was someone called a radiologist always views and evaluates the scans and writes the report that indicates what is going on or not. Now Candi and you get reports and the docs have some disagreement with the reports?

    What is going on here? How many can report situations where a report stated NED then cancer was found directly as part of that same series of visits?  I'm pretty sure Joe's scans indicated something was wrong. I can not recollect a situation like this but could have easily skipped or forgotten. I'd go with the old saying "It ain't cancer until proven". Best of luck. Don

     

  • Crazymom
    Crazymom Member Posts: 339 Member
    #9
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    thyroid

    no cancer on my thyroid, but it is getting less productive everytime I go.  They said I will probably have to start thyroid medication soon.  sending prayers your way....Stay positive .  the doctors are on top of everything these days.  Ann

  • Crazymom
    Crazymom Member Posts: 339 Member
    #10
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    jcortney said:

    Hopefully Not Like Me

    Same chapter, different verse.  My MedOnc & ENT didn't like my thyroid on the CT either.  Ordered an ultrasound which was "inconclusive".   My ENT said "get the half out", so into surgery we went.  Pathologist in the OR found malignant cells but were not Thyroid cancer cells.  Pathology after surgery showed P16 SQ.  Another surgery later, minus the rest of my thyroid and 20+ lymph nodes we found SQ in three nodes.  This was a recurrence of my BOT P16 that was NED only three months ago.  I'm now 20 months out of treatment and just restarted chemo.

    I wish you better luck BUT YOU MUST get it completely checked out, needle biopsy or other testing is paramount, you don't want it to spread.

    Joe

    sorry for the bad news

    sending prayers your way....hang tough...you can get through this.   Ann

  • LumpinmyThroat
    LumpinmyThroat Member Posts: 98
    #11
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    Update?

    Did they get back to you with any new information? Praying it is just inflammation and hoping for good news. Hugs ❤️

  • Duggie88
    Duggie88 Member Posts: 760 Member
    #12
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    BWG

    Hi. It's been a while. I am with Phran and Don.....It ain't  cancer till they say it is. Stay positive. I'm banking on inflamation.

          Jeff

  • hwt
    hwt Member Posts: 2,328 Member
    #13
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    Duggie88 said:

    BWG

    Hi. It's been a while. I am with Phran and Don.....It ain't  cancer till they say it is. Stay positive. I'm banking on inflamation.

          Jeff

    Any results?

    Thinking of you and wondering if you had heard anything yet? Sending positive thoughts your way..........

    Candi

  • phrannie51
    phrannie51 Member Posts: 4,716
    #14
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    hwt said:

    Any results?

    Thinking of you and wondering if you had heard anything yet? Sending positive thoughts your way..........

    Candi

    Me too!! ^^^^

    Been thinking about you for a week.

    p

  • boardwalkgirl
    boardwalkgirl Member Posts: 269
    #15
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    CLEAR

    Sorry for the wait but just got the call yesterday and I wasn't home last night. All clear, no nodules, solid or cystic found. Although the right side is larger than the left, it is still in the normal range. Said there is no need for another ultrasound for 2 years unless I have problems. Said with my history he didn't want to leave any stone unturned. Thanks for all the prayers and concern. It means so much to be able to come here and get support from people who know what it is like to hear that horrible word!

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #16
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    boardwalkgirl said:

    CLEAR

    Sorry for the wait but just got the call yesterday and I wasn't home last night. All clear, no nodules, solid or cystic found. Although the right side is larger than the left, it is still in the normal range. Said there is no need for another ultrasound for 2 years unless I have problems. Said with my history he didn't want to leave any stone unturned. Thanks for all the prayers and concern. It means so much to be able to come here and get support from people who know what it is like to hear that horrible word!

    alright

    BWgirl,

    It is clear you are CLEAR!

    So nice,

    Matt

  • jim and i
    jim and i Member Posts: 1,788 Member
    #17
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    boardwalkgirl said:

    CLEAR

    Sorry for the wait but just got the call yesterday and I wasn't home last night. All clear, no nodules, solid or cystic found. Although the right side is larger than the left, it is still in the normal range. Said there is no need for another ultrasound for 2 years unless I have problems. Said with my history he didn't want to leave any stone unturned. Thanks for all the prayers and concern. It means so much to be able to come here and get support from people who know what it is like to hear that horrible word!

    What a relief.

    What a relief.

  • wmc
    wmc Member Posts: 1,804
    #18
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    boardwalkgirl said:

    CLEAR

    Sorry for the wait but just got the call yesterday and I wasn't home last night. All clear, no nodules, solid or cystic found. Although the right side is larger than the left, it is still in the normal range. Said there is no need for another ultrasound for 2 years unless I have problems. Said with my history he didn't want to leave any stone unturned. Thanks for all the prayers and concern. It means so much to be able to come here and get support from people who know what it is like to hear that horrible word!

    Thats great news.

    That is such good news. I found out after my surgery why I have been taking thyroid sence I was 12. I only was born with half the gland. I only have one side and the other isn't there. Been taking thyroid over 50 years and just found out why mine didn't work right.  Glad to hear you are ok.

    Bill  10/13

  • phrannie51
    phrannie51 Member Posts: 4,716
    #19
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    boardwalkgirl said:

    CLEAR

    Sorry for the wait but just got the call yesterday and I wasn't home last night. All clear, no nodules, solid or cystic found. Although the right side is larger than the left, it is still in the normal range. Said there is no need for another ultrasound for 2 years unless I have problems. Said with my history he didn't want to leave any stone unturned. Thanks for all the prayers and concern. It means so much to be able to come here and get support from people who know what it is like to hear that horrible word!

    Yippie!!!

    Phew!!!!......YES YES YES!!  Can you tell I'm excited and relieved for you.  That had to be an excrutiating wait.  But now for the NED dance in the kitchen....

    p

  • cureitall66
    cureitall66 Member Posts: 913
    #20
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    boardwalkgirl said:

    CLEAR

    Sorry for the wait but just got the call yesterday and I wasn't home last night. All clear, no nodules, solid or cystic found. Although the right side is larger than the left, it is still in the normal range. Said there is no need for another ultrasound for 2 years unless I have problems. Said with my history he didn't want to leave any stone unturned. Thanks for all the prayers and concern. It means so much to be able to come here and get support from people who know what it is like to hear that horrible word!

    Amen!

    Amen for the All CLEAR....safe landings are good!

    ~C

  • KTeacher
    KTeacher Member Posts: 1,103
    #21
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    donfoo said:

    what's up....

    My assumption was someone called a radiologist always views and evaluates the scans and writes the report that indicates what is going on or not. Now Candi and you get reports and the docs have some disagreement with the reports?

    What is going on here? How many can report situations where a report stated NED then cancer was found directly as part of that same series of visits?  I'm pretty sure Joe's scans indicated something was wrong. I can not recollect a situation like this but could have easily skipped or forgotten. I'd go with the old saying "It ain't cancer until proven". Best of luck. Don

     

    me

    I.M on kindle..  Me, I have been told Ned locally and. Taken disk to Stanford to be told Mets.

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