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Waiting to meet NED, not so sure after PET

PJ47
PJ47 CSN Member Posts: 376
in Head and Neck Cancer #1

Hello all,

Had my PET/CT with FDG Tuesday 4 1/2 months after radiation and surgery and today finally got ahold of my radiation oncologist with some results.  

He said it showed "abnormal hypometabolic activity" along the neck muscle where my neck dissection was done.  He was reassuring and said he thought it was the muscle and was 5" long along the scar area and not focal.  Still, I was not expecting this and so am doing my usual, trying to remain calm and make sure no stone is unturned.

 My plan is to send the disk (had them make 3) to Dr. Nettervlle at Vanderbilt and then take it from there.

We do not know if this is from the radiation as I had surgery in early September so that should be all healed right?  Could it be from having my arms over my head for 40 min. in a cold room and tensing my neck muscles?  

Guess I will have to wait and see.  Sending the disk to Vandy tomorrow and meeting with R/O next Tuesday.

I do have what I thought was some lymph drainage half way down the scar to the front of my neck, but wrote it off to lymphedema and that was the concensus at my exam.  

Anyone else have this kind of uncertain PET/CT outcome?  Please let me know.

PJ

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Comments

  • longtermsurvivor
    longtermsurvivor CSN Member Posts: 1,842 Member
    #2
    Hey PJ

    Cancer is HYPERMETABOLIC, not hypometabolic.  Unless this is a typo, there is absolutely nothing to be concerned about.

     

    best

     

    Pat

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  • PJ47
    PJ47 CSN Member Posts: 376
    #3
    longtermsurvivor said:

    Hey PJ

    Cancer is HYPERMETABOLIC, not hypometabolic.  Unless this is a typo, there is absolutely nothing to be concerned about.

     

    best

     

    Pat

    My bad

    I guess I heard hypo instead of hyper when he called because I was shaking in my boots.  Affects one's hearing apparently.  So Pat,  you are saying abnormal hypermetabolic is nothing to worry about?  Thanks for writing back,

    PJ

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  • debbiejeanne
    debbiejeanne CSN Member Posts: 3,102 Member
    #4
    pj, i just want to say I'm

    pj, i just want to say I'm praying for a good report from Vandy.  please be sure to let us know what you hear.

    God bless you,

    dj

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  • phrannie51
    phrannie51 CSN Member Posts: 4,716
    #5
    I think it's a great thinking

    that you had them make three disks, so you can send one off to Vandy.  I know it's nerve wracking, but we've heard on here enough times of people getting that first scan, hearing something they didn't understand, or reading something they didn't understand.....only to have the Dr. tell them that they were just fine.....or they get their second scan in another few months and there was nothing there.

    Breathe....the Dr. tried to reassure you, but I know how I was with my first (second, third and fourth scan)...anything but a giant NED.  Re-read what Pat said.....Hypo is good, and that's what you heard.

    Hugs and positive thoughts.

    p 

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  • CivilMatt
    CivilMatt CSN Member Posts: 4,725 Member
    #6
    scan time

    PJ,

    I agree with the others, it is nothing.  If it was more he would have told you so.

    Scans are no fun.

    Matt

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  • Guzzle
    Guzzle CSN Member Posts: 710
    #7
    CivilMatt said:

    scan time

    PJ,

    I agree with the others, it is nothing.  If it was more he would have told you so.

    Scans are no fun.

    Matt

    Novice

    PJ, I am new to this and don't have much knowledge yet. What I can say is that when I was initially pet scanned it showed a secondary area of interest in my bowel. The Dr told me not to worry in his experience it was nothing. I got it scoped and he was right. It was nowt to worry about. I understand the concern though. Regards. G.

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  • longtermsurvivor
    longtermsurvivor CSN Member Posts: 1,842 Member
    #8
    PJ47 said:

    My bad

    I guess I heard hypo instead of hyper when he called because I was shaking in my boots.  Affects one's hearing apparently.  So Pat,  you are saying abnormal hypermetabolic is nothing to worry about?  Thanks for writing back,

    PJ

    hypermetabolic

    can be cancer, or several other things.  From his description that it is "along the muscle" and "not focal' I'd bet you my nickel it is NOT cancer, just still some swelling from surgical healing.  Take this a step at a time, nothing gained by worry.

     

    Pat

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  • PJ47
    PJ47 CSN Member Posts: 376
    #9
    phrannie51 said:

    I think it's a great thinking

    that you had them make three disks, so you can send one off to Vandy.  I know it's nerve wracking, but we've heard on here enough times of people getting that first scan, hearing something they didn't understand, or reading something they didn't understand.....only to have the Dr. tell them that they were just fine.....or they get their second scan in another few months and there was nothing there.

    Breathe....the Dr. tried to reassure you, but I know how I was with my first (second, third and fourth scan)...anything but a giant NED.  Re-read what Pat said.....Hypo is good, and that's what you heard.

    Hugs and positive thoughts.

    p 

    Hi Phrannie,

    I so wanted to hear NED, so this is disconcerting.  Now I have questions about what I heard whether it was hyper or hypo.  Guess I'll have to wait til next Tuesday when I see my RO.  

    I do try and think ahead, so I sent one disk off to Vandy this am priority mail, and have one for the R/O or ENT which ever one needs it and kept one for myself.

    Hope all will be resolved by next week sometime and yes I am breathing.  Thank you for your concern. Hugs back at you. 

    PJ

     

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