No the news we were hoping for

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buzz99
buzz99 Member Posts: 404
in Head and Neck Cancer #1
Buzz had a PET scan June 2 and the results are not the clean scan we had hoped for. A new spot has showed up on his tongue since the last scan 3 months ago. The suspicious area in the right neck is now larger and "brighter". To add insult to injury, he has a clot in his left Jugular vein and so is on Lovenox, transitioning to Coumadin. He has an MRI scheduled for the 21st. He has been radiated twice so cannot get any more radiation. Chemo and/or surgery are probably the only options. We are just blown away by these findings so soon after the end of treatment Janurary 10th. So the PEG and port stay in. It is tough waiting for the MRI and not knowing what is in store for him. Karen
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  • arndog64
    arndog64 Member Posts: 537
    #2
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    I am so sorry to hear that..
    I am so sorry to hear that.. That is my greatest fear. I hope all turns out well for you. Please keep us all informed.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
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    Thoughts & Prayers
    Definitely not the news you were hoping for....

    Hang tough, strive to stay positive....never ever give up faith, attitude, hope and prayers.

    Thoughts & Prayers,
    John
  • adventurebob
    adventurebob Member Posts: 691
    #4
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    Sorry
    Know that you're both in my prayers. Sometimes it takes more than the first round to get it all. Don't stop believing.

    Bob
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #5
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    KEEP POSITIVE THOUGHTS
    Remember, there are plenty of people who have had a re occurrance and have done well.

    Positive thoughts headed your way.

    Best!!

    Mike
  • Glenna M
    Glenna M Member Posts: 1,576
    #6
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    Thoughts and prayers...
    My thoughts and prayers are with you and Buzz during this difficult time. I know how disheartening this news may seem as I know you were hoping for a clean scan.

    Stay strong,
    Glenna
  • tesa
    tesa Member Posts: 123
    #7
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    Glenna M said:

    Thoughts and prayers...
    My thoughts and prayers are with you and Buzz during this difficult time. I know how disheartening this news may seem as I know you were hoping for a clean scan.

    Stay strong,
    Glenna

    Our prayers are with you. We
    Our prayers are with you. We know what you're going through with recurrence; facing that here as well.
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #8
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    Buzz & Karen
    Tough break with this latest PET. I hope the MRI will provide more encouraging results for you. Cheers

    Jimbo
  • ian1511
    ian1511 Member Posts: 42
    #9
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    So sorry to hear that. Will
    So sorry to hear that. Will send prayers and positive energy your way. Darren
  • DJG1
    DJG1 Member Posts: 121
    #10
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    ian1511 said:

    So sorry to hear that. Will
    So sorry to hear that. Will send prayers and positive energy your way. Darren

    My prayers are with you each
    My prayers are with you each and every day.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #11
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    DJG1 said:

    My prayers are with you each
    My prayers are with you each and every day.

    Karen
    Sorry to hear of this, but you gotta Believe that one way or another they will still be able to ace the C. Biopsy is still the only way to know for sure, though I know it'll be kinda tricky. In my Prayers.

    Believe

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #12
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    Hi Karen

    I know the feeling but don’t give up as there is always hope. Remember I too fail my PET scans every time, there is always a hot spot or two to light up the screen. It has been that ways for about 5 or 6 years now, so I don’t worry about it any more.

    Keep you both in prayer
    Hondo
  • Pam M
    Pam M Member Posts: 2,196
    #13
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    Wish the Reports were Better
    Karen,

    Sorry you didn't get better news. I, too, had "dirty" scans after treatment, so had to have surgery in December. I finally got clean scans in April. I agree with you - waiting is horrible - hope you're not stuck in limbo for long.
  • Jan Trinks
    Jan Trinks Member Posts: 477
    #14
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    So Sorry
    Karen:

    So sorry to hear about Buzz's scans. I so know and understand that feeling. Charlie's didn't show back up until this time last year and he was 14 months out from treatment. But as the others have said, hang in there and never ever give up! My best and prayers to you both.

    Jan (Basketcase)
  • ian1511
    ian1511 Member Posts: 42
    #15
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    Hondo said:

    Hi Karen

    I know the feeling but don’t give up as there is always hope. Remember I too fail my PET scans every time, there is always a hot spot or two to light up the screen. It has been that ways for about 5 or 6 years now, so I don’t worry about it any more.

    Keep you both in prayer
    Hondo

    Just to chime in on Hondo's
    Just to chime in on Hondo's comment. There does seem to be a difference in who loves PET versus CAT scans. The rad/onc folks seem to like the PETs and the onc folks the CATs (at least where I am in Wisconsin). My oncologist told me that the PETs often give false positives that leave them wondering about the validity of the finidings. Plus, not all computer screens are the same. I've seen "hot spots" look not as hot on some screens in our clinics versus other screens. I was told, even with a high expectation of success for stage 2 NPC, to not be surprised to find some "hot spots" on the PET 3 months after completion of radiation.

    You are in my prayers.

    Darren
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
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    ian1511 said:

    Just to chime in on Hondo's
    Just to chime in on Hondo's comment. There does seem to be a difference in who loves PET versus CAT scans. The rad/onc folks seem to like the PETs and the onc folks the CATs (at least where I am in Wisconsin). My oncologist told me that the PETs often give false positives that leave them wondering about the validity of the finidings. Plus, not all computer screens are the same. I've seen "hot spots" look not as hot on some screens in our clinics versus other screens. I was told, even with a high expectation of success for stage 2 NPC, to not be surprised to find some "hot spots" on the PET 3 months after completion of radiation.

    You are in my prayers.

    Darren

    PET
    Hi Darren, the PET and CT both are tools....one less expensive than the other...both give results needing interpretation.

    At my facitilty my ENT is the lead, his logic like mentioned, they are merely tools...the real experience and Dx comes from him. He's a hands on type that pokes, probes and feels..noting any changes from my last visit.

    My Chemo MD, likes the scans as reference, she utilizes the CT as in-betweens of the PET. The PET actually gives much more detail, but the CT has value in what it shows as well, especially any changes from previous scans.

    I'm sure on here that most will agree not just NPC, but all of the H&N Cancer recoveries have the potential to show rads debris and residual on early PETS, not all, but a lot it seems.

    Most PET scans seem to have the better results 4 - 6 months post rads.

    Best,
    John
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #17
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    Karen; I'm sorry you're
    Karen; I'm sorry you're going through this again. Someone at our cancer center was on their 3rd time. You probably know that it could be something but it could be nothing. Best thing to do is to get your ducks in a row.

    Have you looked at cyber knife or tomotherapy? If not; check out their pages & make a phone call to see if it's even an option if needed.

    My hub had a CT which lit up; 2 doctors said no; it was damage & to wait till the next pet which was good. It's still a little early; from what we were told; a good 6 months before things calm down from rads.

    If you are looking at recurrence; is it time to re-evaluate where he's being treated?

    Hang in there.
  • Joel4
    Joel4 Member Posts: 263 Member
    #18
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    Daddisgrl said:

    Karen; I'm sorry you're
    Karen; I'm sorry you're going through this again. Someone at our cancer center was on their 3rd time. You probably know that it could be something but it could be nothing. Best thing to do is to get your ducks in a row.

    Have you looked at cyber knife or tomotherapy? If not; check out their pages & make a phone call to see if it's even an option if needed.

    My hub had a CT which lit up; 2 doctors said no; it was damage & to wait till the next pet which was good. It's still a little early; from what we were told; a good 6 months before things calm down from rads.

    If you are looking at recurrence; is it time to re-evaluate where he's being treated?

    Hang in there.

    Waiting
    Very sorry for the suspicious PET results. I know how hard waiting can be and I will be praying and believing for the best possible results.

    God bless,

    Joel
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #19
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    Joel4 said:

    Waiting
    Very sorry for the suspicious PET results. I know how hard waiting can be and I will be praying and believing for the best possible results.

    God bless,

    Joel

    Not the news you wanted.
    Karen, just wanted you to know that you and Buzz are in my thoughts and prayers.
  • Nancyboy
    Nancyboy Member Posts: 2
    #20
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    Stay Strong
    I'm new to this website but have noticed some of your other postings and was very sorry to read this one. I can't know exactly how you're feeling, but I have a fairly good idea--my husband finished his radiation treatments 18 days ago and we are fearful of what his future scans will show. As many of the other people making comments have said, don't give up hope. You know that many people are sending positive thoughts your way. Nancy
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #21
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    Nancyboy said:

    Stay Strong
    I'm new to this website but have noticed some of your other postings and was very sorry to read this one. I can't know exactly how you're feeling, but I have a fairly good idea--my husband finished his radiation treatments 18 days ago and we are fearful of what his future scans will show. As many of the other people making comments have said, don't give up hope. You know that many people are sending positive thoughts your way. Nancy

    Welcome
    Welcome to the forum Nancy.....

    Great people here, tons of experience and usually any questions you might have, someone here has had some experience with it....

    As you guys are just finsihing up, I'm sure you can offer your own to the new folks as well.

    Best,
    John

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