Shambles.

Tonsil Dad
Tonsil Dad Member Posts: 488
in Head and Neck Cancer #1
What a cluster f@#k, as you all know and thanks for the well wishes and prayers
I went for my first PET two weeks ago today and they said I'll have the results the
following Monday. Well no phone call came or Tuesday or Wednesday so my
wife called my ENT and the said he's on vacation and no one can give me my results
as his nurse was also away and they will be back Monday. Well no phone call or
Tuesday or Wednesday well finaly today my wife call again ( 2 weeks since the scan)
and the nurse told her that the scan showed no cancer so I presume NED but said
there was a bit of the tumor still there. I don't know numbers but she said the tumor
was something 13.5 before treatment now it is 3.2 and my ENT will explain this on
my next visit on the 21st. She said they will just monitor the situation with scans
to see if it changes but no cause for alarm as there is no cancer in the body. Talk
about scanxiety waiting for results from a large hospital (University of Miami, H&N))
but it all turned out right in the end.

Thanks for all your thoughts and prayers.

God bless
Tonsil dad,

Dan.

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    #2
    No cancer!
    Congrats! You would think someone would have been anxious to share that good news with you. Waiting is hard enough without putting you and your wife through that. Hope you let the doctor know so no one else has to endure what you did. Thankfully good news in the end :-)
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #3
    Waiting IS hard!
    I know what you mean. I'm waiting for my first PET after treatment. When I first finished the chemo and rads, I "said" I wouldn't have a PET because I could not face another round. But now I'm four months out, and I've emotionally recovered enough to face whatever may lie before me. So it is wait and worry for me. Not like it's different than anyone else. But I'm glad your results are as good as they were. Rick.
  • blackswampboy
    blackswampboy Member Posts: 341
    #4
    happens in toledo too
    similar thing happened to me, from a hospital for which I otherwise have nothing but the highest regard.
    nobody ever called with results of my first PET scan, to tell me if my SCC had metastasized. I finally called them, like a week after results were supposed to come back, and a nurse told me the good news. for the price of those things, you'd think a phone call would be included, lol.
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    starts bad ends good
    Hi Dan,

    I think in the midst of all this you had a good report, congratulations. Other than, they lost it or the world is ending, I can think of no good reason to with hold the PET results. Other than call them a bunch of inconsiderate bumbleheads, I’ll leave the subject alone.

    Now, that you gained back your sanity, relax and enjoy the moment, you deserve it.

    Best,

    Matt
  • jim and i
    jim and i Member Posts: 1,788 Member
    #6
    Congrats on the
    Congrats on the nocancer.

    Debbie
  • Ingrid K
    Ingrid K Member Posts: 813
    #7
    We'll take the good with the bad, right ?
    it's hard enough to wait...no one needs that extra added stress having to hunt down your results.

    As others have said, what started out as a bad experience ended up with the world's best news....so CONGRATS to you. Hope the next round of scans goes a little bit smoother but gets the same results !
  • KareGiver
    KareGiver Member Posts: 301 Member
    #8
    Ingrid K said:

    We'll take the good with the bad, right ?
    it's hard enough to wait...no one needs that extra added stress having to hunt down your results.

    As others have said, what started out as a bad experience ended up with the world's best news....so CONGRATS to you. Hope the next round of scans goes a little bit smoother but gets the same results !

    As Ingrid K said,
    Hope the next round goes smoother. Good news all the same! As it seems even more, we must be proactive...take care!
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #9
    KareGiver said:

    As Ingrid K said,
    Hope the next round goes smoother. Good news all the same! As it seems even more, we must be proactive...take care!

    Grrrrr...and :):):):):) ...
    Well, I'm not sure which way to land on this one. Keeping my fellow warrior in the dark for that long is just unfair.....but the news is great it would seem. However, if it were me there would be NO WAY I'm waiting until the 21st .....no sir, I'm driving down or calling every day at a set time.

    Either somebody at the oncolgist office really likes me or it's just the policy of the place I get my care from ..but this Monday I go down for my follow up CT scan of neck (no PET as I had a PET/CT 3 mo. after my lasts treatment on May 6 ish)...and I'm told I will get the results the same day. They did the same thing with my PET / CT scan in May. It takes the entire day but I told them I am happy to make a day trip out of it and will be there at 10am and back at 4pm ...no problem.

    Dan ....I'm excited to hear the rest of the story. You have been on my regular nightly prayers but also on the "prayer task team" as well!!!!!

    Best,

    Tim

    Say hello to your wife :)

    Oh...for fun I will take a stab at the numbers and say it is a "heat index" thingy....no white hot so no cancer, just a little heat from the post tx rads (they assign numbers to the degree of heat??)...okay, that's my 2 cents and maybe Pat will step in and tell us what the numbers mean ...or somebody with more experience than I :)
  • katenorwood
    katenorwood Member Posts: 1,912
    #10
    walk a mile in our shoes dude
    Dan,
    I'm glad you finally got the good news. But grrrr why do we have to be put through the waiting game for their convienence. You know he has a partner, they all do. I would tell your onc the next time you go in that it was unexceptable and we as c-patients don't need the added stress. I hope all turns out just wonderful for you ! Will be praying for you and yours, Katie
  • hwt
    hwt Member Posts: 2,328 Member
    #11
    katenorwood said:

    walk a mile in our shoes dude
    Dan,
    I'm glad you finally got the good news. But grrrr why do we have to be put through the waiting game for their convienence. You know he has a partner, they all do. I would tell your onc the next time you go in that it was unexceptable and we as c-patients don't need the added stress. I hope all turns out just wonderful for you ! Will be praying for you and yours, Katie

    Understood anxiety
    I called for my 1st CAT results and was told the doctor was out of town, I asked the nurse if she could at least give me an indication because I was very anxious...she read me the entire report. I know she wasn't supposed to.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
    Just an FYI, most places (if you ask), will give you a desk copy (same as the MD gets), within 24 hours after the scan.

    Now up to your ability on understanding the results.

    Most of the ones that I have gotten are basic enough that I can read "no changes since last report, and no signs of recurrence"....

    JG
  • phrannie51
    phrannie51 Member Posts: 4,716
    #13
    Well Grrrrrrrrrrrrrrrrrr to them....
    but congrats on the belated news.....pretty damned rude to withhold that kind of information for so long....crminy.

    But I am SO SO SO HAPPY, it was good news they had in their pockets.

    p
  • VanessaSLO
    VanessaSLO Member Posts: 283
    #14
    phrannie51 said:

    Well Grrrrrrrrrrrrrrrrrr to them....
    but congrats on the belated news.....pretty damned rude to withhold that kind of information for so long....crminy.

    But I am SO SO SO HAPPY, it was good news they had in their pockets.

    p

    Great news, congratulations!
    Yes, congrats from my side too... It's great to hear good news but it's just too stressful to wait for them so long. I know how terrible is to wait for results. Well, my dad is just on the beginning of his treatments, but I remember how we waited for the first results when he was firstly diagnosed. Dad called his doctor and he said he still doesn't have the results on the desk, so he had to call the next day again. So, waiting is the worst. Yes, and it's terrible when you know they know the results and nobody can't tell you.

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