Next and Maybe Last PET

tommyodavey
tommyodavey Member Posts: 728 Member
in Head and Neck Cancer #1

Hey All,

 

Since the successful treatment of my cancer I haven't come back in here and posted the NED topic.  In fact, my doctors and nurses never even heard the term before.  My last PET scan was August of last year and it was all fine and dandy.  Now, once again my doctor has ordered another one.  Here comes the weird part.

 

He said that if he writes down "History of tongue and neck cancer", it will be denied.  The insurance company will only approve the PET if you have cancer.  So what he writes now is, "Tongue and neck cancer", and it's approved.  I go in on Wednesday morning.  He also said that after 5 years there is no way to get a PET scan unless the cancer returns for sure.  But my type was different than most, a bit rare.  Mucoepidermoid Carcinoma needs to be checked for 15 years to be declared "cancer free", not the usual five.  Whatever, I'm not worried about it.  I just thought you guys might want to remember that phrase if your insurance company won't pay for it.

 

That's it, if something is amiss, I'll post it.  But again, it's doubtful.  My only concern is it going to the lungs,  which is a concern a lot of us have.

 

FYI, cancer free since end of treatment, April 2, 2012.  In fact, 2012 was so awful that I've decided to not count it anymore.  I'm not 60, I'm 59!

 

Tom

Comments

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    #2
    Oh goodness!!

    I'm a MEC survivor, too.  My doctors said I'd be watched for TEN years to make sure I was all clear.  I've also never had a PET scan. 

     

    Congrats on being cancer free and having a great PET (last time).  Let us know how this one goes!!  Also, thanks for the info :)

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #3
    TracyLynn72 said:

    Oh goodness!!

    I'm a MEC survivor, too.  My doctors said I'd be watched for TEN years to make sure I was all clear.  I've also never had a PET scan. 

     

    Congrats on being cancer free and having a great PET (last time).  Let us know how this one goes!!  Also, thanks for the info :)

    See?

    TracyLynn,

     

    They probably didn't do a PET scan on you because it rarely comes back, or the insurance company denied it.  Either way, you're good to go!

     

    Tom

  • Guzzle
    Guzzle Member Posts: 710
    #4
    tommyodavey said:

    See?

    TracyLynn,

     

    They probably didn't do a PET scan on you because it rarely comes back, or the insurance company denied it.  Either way, you're good to go!

     

    Tom

    groovy!

    Well done Tom!

  • Sable1
    Sable1 Member Posts: 14
    #5
    Pet Scan

    That is awesome to hear that treatment has been successful. I congratulate you and your medical team. I am facing my first post pet scan next week and am scared to death! I was diagnosied with tonsular caner involving two lympnodes in February of 2014. Endured a  neck disection followed by combined chemo and RAD. I wish you the best of luck!

     

    Sable1

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #6
    tom, i'm so glad your doc

    tom, i'm so glad your doc found a way around the bs.  congrats on being cancer free and praying the scan shows you still are.  you're right about the lungs, we all seem to worry about that but do our best not to let the thoughts run away with us.  i get mine checked every 6 months to make sure the spots don't grow.  the last one in aug. showed one grew to 1  cm so we'll have to see what the next one shows in Feb.  Like you, I'm going to try not to worry.  won't help any way, right?  take care friend.

    God bless you,

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #7
    words of wisdom

    Tom,

    Congratulations on passing along the “secret phrase”, I have learned many secrets here.

    Now to get this right it is 15 years for men and 10 years for women (TL72) and we can discard the bad years?  Great!

    Keep moving forward.

    Matt

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    the coding game

    Good to hear from you Tommy.  Glad you're doing well.  

     

    Pat

  • wmc
    wmc Member Posts: 1,804
    #9
    NED..........

    Congratulations on how well you have done Tom. Sorry you doctors did not use the term N.E.D.

    My Dr wrights is on his report each time I see him and sends me a copy that he sends to the other doctors, as well as telling me I am NED.  Stay strong and keep popping in ever so often, It's good to hear from you.

    Bill

  • jim and i
    jim and i Member Posts: 1,788 Member
    #10
    Good to hear from you.

    Good to hear from you. Praying this one is clear as well.

    Debbie

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #11
    CivilMatt said:

    words of wisdom

    Tom,

    Congratulations on passing along the “secret phrase”, I have learned many secrets here.

    Now to get this right it is 15 years for men and 10 years for women (TL72) and we can discard the bad years?  Great!

    Keep moving forward.

    Matt

    Terms

    Hey Matt,

     

    With TracyLynn it may have been only in one place.  Mine had spread from my tongue to my right neck lymph nodes (2 positive).  

     

    Thanks to All who replied back.  Everyone here is so awesome and great company when feeling all alone in the world.  

     

    As long as my phone doesn't ring from my surgeon then all is well.  No news is good news.

     

    Tom

Discussion Boards