Worried about PET scan next week

Dean54 Member Posts: 160 Member

Had my first follow up with the ENT today and he said everything looked ok but depending on the out come of the scan whether I would have to have more treatment, specifically a neck dissection. I had already thought of this but now I'm so worried and can't get it out of my mind.

I think he said even if it lit up a little they would wait for another 3 months, and another scan to make sure it's still there before they do surgery. That means I'll never get this PEG tube out. 

Sorry just venting a little here. I so want this to be over.


  • soonermom
    soonermom Member Posts: 155
    PEG tube

    You will get it out!  Hang in there!  

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member


    Not to worry, if you are getting enough calories without the  “PEG aid” you are ready to de-PEG.  Nobody is going to force a non-used PEG on you.  BUT, non-used is the operative word here.

    The first and second and third and any scan can be a nerve bender.  You have gone through the treatment and the results should be good.  Many H&N members show hot spots, but they are not always bad. It  could  just be some residual cooking.

    I am going on 6 years post and I still want it to be over, but I am always concerned (a little).


  • Dean54
    Dean54 Member Posts: 160 Member
    Thanks for the replies. I

    Thanks for the replies. I have NEVER used the PEG tube even tho I think my throat is worse now than it has ever been since the start of this ugly journey, I can still swallow ok and am slowly gaining some weight back.

    I'm currently more worried about having to possibly have surgery and the set back that will cause if the PET scan doesn't turn out good. I know I shouldn't worry until it happens but? I am a worry wort.

  • Peneloppe
    Peneloppe Member Posts: 28
    Hi, you can ask them to

    Hi, you can ask them to remove the PEG, you have proven that you did not need it and that you maintained your weight.  My husband had his removed before the first ct scan, he hated the thing so much that having it gone lifted a weight of his shoulder.

    wishing you good results with your scan

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    edited January 2018 #6
    Neck Dissection

    Like the others said, try to stay positive and you'll most likely be fine.  Even if you do have a neck dissection it really isn't all that bad. Almost no pain to speak of.  Sometimes they touch a nerve and it will give you trouble for a short time but most of us had no issues except for lymphedema. Mine has gone down by 60% in 5 years.  No one ever sees the scar on my neck because they cut my along a wrinkle line.

    Hang in there.  In the end it will all turn out okay.

  • Curlyn
    Curlyn Member Posts: 189
    edited January 2018 #7
    You will be okay, Dean. Neck

    You will be okay, Dean. Neck dissection sounds scary but can be as minimal as removing one lymph gland. Mine was extensive, but surprisingly it was the chemoradiation that was the nightmare, ha ha. Someone adked recently if I had a facelift- bring it on, I say! Seriously, 6 months later, can hardly see the scar . Lymphedema minimal and definitely brought on by the radiation. I'm back to the gym (it was very hard to get started on that) and I'm beginning to look like me. People ask where I was for 6 months, when I tell them, they say how good I look despite. It's all relative. But I would listen to Matt- you will be okay. Your doctor sounds excellent, proactive and informing you of possibilities- his job. Keep the faith! Stay busy!

  • Dean54
    Dean54 Member Posts: 160 Member
    Thanks for the words of

    Thanks for the words of encourgament everbody, I really appreciate it and it's calmed me down a little. I know I can get thru it if I have to after all else I've been thru and need to think positive about next week that everything will turn out alright. I am so ready to get back to the things I used to do and have never been a very patient person so the wait is killing me.

  • OKCnative
    OKCnative Member Posts: 326 Member
    edited February 2018 #9
    As someone who has been there

    As someone who has been there, don't let yourself get too worked up over your first post treatmetn PET scan. My scan came back TERRIBLE and for 13 days I was told I had terminal lung cancer now. In the end, it was just a really bad infection. So, even if the PET is 'hot'  don't fret and get a confirmative CT scan a couple of weeks later.  I'm noe on my third post treatment scan at only 4 months post. Hand in there.

  • Dean54
    Dean54 Member Posts: 160 Member
    edited February 2018 #10
    Thanks OKC, I did read one of

    Thanks OKC, I did read one of your other posts and the false diagnosis and can only imagine what you went thru until you found out different. I am still hoping for NED but know anything is possible.