Advice

FD
FD Member Posts: 2
in Head and Neck Cancer #1
I finished treatment (Surgery, Rad, Chemo)for stageIV oropharyngeal base of tongue with three nodes in the neck. Although the preliminary post-treatment inspection by the surgeon left him optimistic, I still await my first PET scan post-treatment in about a month. How have any of you handled the anxiety/ terror or awaiting your next PET scan, hoping for the best, knowing it could be the worst?

FD

Comments

  • ditto1
    ditto1 Member Posts: 660
    #2
    Not sure we
    can, I finished my treatments about 6 weeks ago and have my 1st scan on Oct 3rd and I to feel the same as you and many who post. I was dx with BOT Stage 4. Not sure but I believe its tougher than the 1st time we are dx with cancer because then we know a plan will be laid out we follow the plan and it will hopefully get rid of the cancer. The follow up to see if the plan worked is tougher in my opinion because we so desparetly need it to have worked, we so badly want to be NED to at least reduce or eliminate the anxiety and show it was all worth it and now hopefully we can get on with LIFE... so we are in the same boat. I will turn it over to God for its his will that will be done no matter what. But cannot lie really want to get it over with. We will be fine. Prayers coming your way for a NED.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Alcohol and Drugs....
    LOL, OK, just teasing there.....

    Scanxiety is something we all deal with. Unfortunatly I can't say that even time helps siginificantly...it's just a way fo life I presume.

    You tend to be a little less scared as time goes on and you have a few good scans under your belt. But then you have a week of seeing a lot of people on here that are having a run of bad luck.

    Though there were many the week before last and a few this week with NED....

    Best,
    John
  • hwt
    hwt Member Posts: 2,328 Member
    #4
    Skiffin16 said:

    Alcohol and Drugs....
    LOL, OK, just teasing there.....

    Scanxiety is something we all deal with. Unfortunatly I can't say that even time helps siginificantly...it's just a way fo life I presume.

    You tend to be a little less scared as time goes on and you have a few good scans under your belt. But then you have a week of seeing a lot of people on here that are having a run of bad luck.

    Though there were many the week before last and a few this week with NED....

    Best,
    John

    Scans
    At this stage of the waiting game, you have done all you can do and have to put it in God's hands. Prayers for clear scans.
  • VanessaSLO
    VanessaSLO Member Posts: 283
    #5
    hwt said:

    Scans
    At this stage of the waiting game, you have done all you can do and have to put it in God's hands. Prayers for clear scans.

    Waiting game...
    Well, today is one of those days that I feel a bit discouraged. After so many NEDs on this forum now I read also some recurrences... It scares me terribly that this is going to happen to my Dad too. He's been recovering now from radiation and chemo. He finished last week... At first we were all relieved that it is over, and now I'm really scared that tx might not be as successful as we want or that metastasis will show up or second cancer maybe... It's not like, you know, when you break your leg or you have a car accidence and you must recover from hard treatment. Because then you know you will be ok eventually, you don't have deadly desease... But with cancer and surviving this very nasty treatment this is not the same: you still don't know whether you're going to make it or not.

    So I guess we all have the same fears.

    And like HWT says: put it in God's hands!! When I say that to myself I immediatelly feel better. God knows what he's doing :).
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6
    just try and scan me
    FD,

    To relive all scanxiety would take constant drug use or a lobotomy (neither of which I am willing to do). I live with it, try not to think about it and definitely don’t dwell on it. I will hit the 6 month (post) mark on Sunday and from what I can tell the ENT and the chemo onc tell me no PET at 6 months (insurance won’t cover it), the rad onc wants one, talk about causing scanxiety. So I guess the scope, the feel and the pull of the tongue is all I get at 6 months. Now at 9 months they all agree, I should have a PET (lucky me). As if treating the cancer was not enough torture.

    By-the-way, my 3 month PET was “better than good” as quoted from my radiation oncologist.

    Good luck!

    Best,

    Matt

    Oh, I take a Lorazapam before ALL scans
  • blackswampboy
    blackswampboy Member Posts: 341
    #7
    strength and optimism
    my post-treatment PET scan is on Monday. treatments ended first week of July, so it's been a long slow recovery and wait.
    not too much scanxiety--I'm tired of being in limbo. either way, I'm ready to know what's happening.
    it certainly helps to have optimism from the oncs and ENT--but my main optimism comes from finally starting to feel more like my old self. energy is finally returning, beard is growing in again, and lost weight is slowly but surely coming back.

    anyway, 11 weeks of side-effects and waiting is enough. it's time to either put this in the rear view and get on with my life, or go to Plan B.
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #8
    blackswampboy said:

    strength and optimism
    my post-treatment PET scan is on Monday. treatments ended first week of July, so it's been a long slow recovery and wait.
    not too much scanxiety--I'm tired of being in limbo. either way, I'm ready to know what's happening.
    it certainly helps to have optimism from the oncs and ENT--but my main optimism comes from finally starting to feel more like my old self. energy is finally returning, beard is growing in again, and lost weight is slowly but surely coming back.

    anyway, 11 weeks of side-effects and waiting is enough. it's time to either put this in the rear view and get on with my life, or go to Plan B.

    STAY BUSY!~ :)
    I have been working non-stop cutting wood (trying to get four cords of wood for winter) and I have to tell you, I have not been thinking much about the "c" or anything related to it many a times....I told my wife...I should get a hobby or extracurricular activity I enjoy doing and do it often...

    There is no magic advice I'm afriad for the waiting ...but staying busy sure seems to be working for me......

    During treatments you are "figthing adn attacking" ...you are thinking about beating "c" ....then poof, your are cut loose, healing and all you think about is "did I win?" ....

    Keep us posted ...but go get busy :)

    Tim
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #9
    Plans?
    There will be a new plan if the current/last plan wasn't totally successful. Each new plan is a greater challenge. I've had 3 plans, and am waiting for a 4th. Rick.

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