What a roller coaster....

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  • jtl
    jtl Member Posts: 456
    #22
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    phrannie51 said:

    Those are numbers

    from the PET scan, swopoe....uptake numbers, or basically how bright they lit up.  The brightness in my nodes were 5.....this spot behind my nose was 2.7....the light is caused by metabolic activity....the brighter the more activity, and the more chance of cancer in that place. 

    p

    Low numbers

    My original SUV was 3.9 increasing to 4.5.  It was never spotted on a CT or a visual.  I had my last PET scan 18 months ago but I recently had a pelvic area CT  (bladder, kidneys, ect) and plan on getting a CT lung scan in a couple of weeks. Medicare will not pay for any additional PET scans unless they are due to a new cancer or recurrance. I had one Dx and followed by 4 additional. I guess if I was concerned I could pay out of pocket for another but without any visable symptoms I think the scope and CT's will be sufficient. When are you having surgery?

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
    #23
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    jtl said:

    Low numbers

    My original SUV was 3.9 increasing to 4.5.  It was never spotted on a CT or a visual.  I had my last PET scan 18 months ago but I recently had a pelvic area CT  (bladder, kidneys, ect) and plan on getting a CT lung scan in a couple of weeks. Medicare will not pay for any additional PET scans unless they are due to a new cancer or recurrance. I had one Dx and followed by 4 additional. I guess if I was concerned I could pay out of pocket for another but without any visable symptoms I think the scope and CT's will be sufficient. When are you having surgery?

    John

    I have a neck dissection...

    this coming Friday....gulp!  And he might biopsy the nasopharynx....he and I are going to have a talk before surgery on that....I want it done! 

    p

  • swopoe
    swopoe Member Posts: 492
    #24
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    phrannie51 said:

    I have a neck dissection...

    this coming Friday....gulp!  And he might biopsy the nasopharynx....he and I are going to have a talk before surgery on that....I want it done! 

    p

    Good luck on Friday! You are

    Good luck on Friday! You are going to do great! Hope you get the doc to do the biopsy too to be safe.

  • avisemi
    avisemi Member Posts: 172
    #25
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    phrannie51 said:

    I have a neck dissection...

    this coming Friday....gulp!  And he might biopsy the nasopharynx....he and I are going to have a talk before surgery on that....I want it done! 

    p

    Phrannie,
    go in faith and in

    Phrannie,

    go in faith and in peace.  we will be praying for you and waiting for an update.  sending you much love and support 

  • osmotar
    osmotar Member Posts: 1,006
    #26
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    phrannie51 said:

    I have a neck dissection...

    this coming Friday....gulp!  And he might biopsy the nasopharynx....he and I are going to have a talk before surgery on that....I want it done! 

    p

    I wish 'll A True Warri

    P51 you have always been a great source of support to everyone here , your  a fighter , a survivor and I'll tuck you in one of my pockets , blessings and major mojo to you this Friday.

    linda 

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #27
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    phrannie51 said:

    I have a neck dissection...

    this coming Friday....gulp!  And he might biopsy the nasopharynx....he and I are going to have a talk before surgery on that....I want it done! 

    p

    Good luck on Friday

    Got everything crossed that can be crossed.

    Mike

     

  • traceyd1
    traceyd1 Member Posts: 79 Member
    #28
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    MD Anderson

    Hi Phrannie,

    I am so sorry you have to go through this!  I would wait until after your surgery to contact MD Anderson, and here is why. You will have much more information to share with them if you have been biopsied.  My husband Jim has been followed by MD Anderson since March.  The process to get an appointment is relatively easy after you fill out the initial paperwork on line.  MDA will contact you via email and let you know what exactly they need.  In our case, they requested copies of all biopsies (even the initial one from 2011).  These labs that have your slides are used to dealing with MDA and know just what they need.  We were able to be seen within four weeks of contacting them.  My husband is primarily being followed by the thoracic surgeon and the sarcoma clinic, but we did initially see one of the Head and Neck physicians and were very pleased with her.  (we chose to keep his head and neck care in Baton Rouge, as his primary head and neck surgeon is great and actually has mentored some of the MDA staff.)  They also have a great web page called My MDAnderson that you can access for emailing them as well as look at reports and set up appointments.

     

    Good Luck to you and God Bless.

    Tracey

  • jackflash22
    jackflash22 Member Posts: 524 Member
    #29
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    Dissection

    praying for you phrannie that you sail through the next stage. I had a neck dissection right down to my tongue base. It wasn't as nearly as bad as the end of rads. The neck numbs from cut nerves so it's not very painful more of a discomfort. I had to have a trache in my throat for a few days and couldn't talk. I remember doing charades with my visitors or writing with chalk on a board. My silly niece scribbled down the answer on the board so I scribbled back no need to write it, YOU can speak. Made us all laugh, mine was silent. The neck feels wooden after and not all feeling in my neck has come back but that don't bother me. It's wonderful what they can do for cancer these days. Roll on a simple cure and treatment I think they are getting there. 

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