understanding pet ct scan

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sconnolly
sconnolly Member Posts: 2
in Head and Neck Cancer #1

Just received scan and need to understand prognosis.  Doctor is missing and will be able to see one on tuesday.  The impression ;  Hypermetabolism within the right submandibular space.  There is a corresponding soft tissue nodule on the localizing ct scan.  The calculated suv is 9.9 The uptake is consistent with malignancy presumably on the basis of pathologic lymphadenopathy.  heterogeneous F-18-FDG activity within the osseous framwork and liver which limits evaluation for metastatic malignancy.

Sonograms and further testing advised for liver, spleen cysts etc.

Help- this looks awful.  I started out with squamous cell skin cancer which was removed this summer with mohs and as the lump seemed to come from nowhere.  

 

Can anyone decipher and tell me how bad this is.  I think it already has moved and metastisized.  Where does this take me

 

Thanks if anyone can help.  This is a holiday weekend and no one is around.

 

Susan

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  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
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    Hey Susan

    Sorry for the aniety this brings.  Seems this type of result always happens when there is no one around to help understand.  Time for you to go an hour at a time, distract yourself, just put in the hours until you can have a better conversation.  If I understand you, you had a squamous carcinoma of the skin treated by Mohs surgery, presumably in an area under your chin or near where this report is now sending out a warning.  If so, then I'm guessing you had nothing else done until now, as Mohs surgery is a stand-alone.  No radiation, no chemo, just wait and see follow up.

     

    This report says you likely have a single positive lymph node under the chin.  though it doesn't say what size, that isn't very important.  that's the only thing of importance on this report.  All the rest of the stuff is just words.  So you are going to go in on Tuesday, they are going to tell you just this, and they are going  to suggest addditional testing to make sure there is nothing else going on.  You will have that additional testing, and it will be negative.

    You will also get a tissue diagnosis from this node.  There are a number of ways to do that, but they may recommend fine needle aspiration to get a micrroscopic diagnosis, or they may just recommend the node be removed.

     

    And after all that, they may have to talk to you about additional treatment.  Radiation would be likely discussed.

    This is the likely sequence of events for you.  You have a problem, but you ain't dead.  And you are still very curable.  Sorry to have to post all this stuff at you.  I've kind of been where you are at a few times, and i'm still here talking about it.

     

    best to you

     

    Pat

     

     

     

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #3
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    The Waiting Game

    It is very hard to wait.  But it is something we all do even after diagnosis.  I can only add to what Pat said.  And that is get a second opinion if you are not satisfied with what you are told and be sure you are using a head and neck specialist.  Something we didn't know when my husband was diagnosed with laryngeal cancer.  I have always felt that if we had been seen by one at the very beginning we wouldn't be where we are now.  Dont' get me wrong, the ENT was great in diagnosing my husband right away and the oncologist was great too.  But when we were told he was NED after radiation and chemo, he wasn't and the swelling from the radiation hid the tumor that was still there and large. 

    I also feel that when he was diagnosed with squamous cell cancer on his face and we were told he could wait to have it removed since we had a planned non-refundable vacation, that the doctor was wrong.  We were told it couldn't spread but that wasn't true.  It got into my husband's blood and spread to his laryx, then to the cervical of his esophagus and then to his lung.  He elected after 70 rounds of radiation, chemo and surgery that he wouldn't do anything else.  This was 9 months ago and is doing so-so at this point and Hospice has come in although he is not end of life yet. 

    So guess what I'm saying is that we all worry while waiting for the doctor to explain test results and second opinions and even third are great to have.

    Wishing you the best -- Sharon

     

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