PET not clear

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jim and i
jim and i Member Posts: 1,788 Member
in Head and Neck Cancer #1
Well the stress goes on. The PET shows the lymph nodes are clear but there is something still at tumor site, scar tissue, inflamation, cancer? doctor is not sure. He will do another PET in 3 months. The bad news is that he has a lot of symptoms for metastasis to brain so has ordered a CT of brain right away. Doc wanted a MRI but Jim has a pace maker so that is out. He did say the lump under the tongue was nothing. Jim is doing better than I am so I am trying not to woryy him with my bad thoughts.

Has anyone here had met to brain and survived?

Debbie
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  • Pumakitty
    Pumakitty Member Posts: 652
    #2
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    Debbie
    Sorry to hear about the added stress. What symptoms is Jim having that makes the doctor think there are mets to the brain?


    Kathy
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
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    Hoping the hot spot on the
    Hoping the hot spot on the PET scan is just scar tissue or stuff still healing. I also pray that the CT scan is normal, and Jim is ok.
  • tesa
    tesa Member Posts: 123
    #4
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    sweetblood22 said:

    Hoping the hot spot on the
    Hoping the hot spot on the PET scan is just scar tissue or stuff still healing. I also pray that the CT scan is normal, and Jim is ok.

    Debbie,
    Just keep praying
    Debbie,
    Just keep praying and thinking positive. I know it's very hard and I know it's so stressful, I have the same stress with my mother's situation. I'm going to keep praying for Jim.
    Stay strong in the faith.
    When will you find out the results of the brain CT?
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #5
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    I hope
    I hope the doctor is doing the CT to brain so he has a base line for future scans.

    Prayers going out for both of you.

    I hate the waiting game also.

    John
  • jim and i
    jim and i Member Posts: 1,788 Member
    #6
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    Pumakitty said:

    Debbie
    Sorry to hear about the added stress. What symptoms is Jim having that makes the doctor think there are mets to the brain?


    Kathy

    balance
    Jim has had a balance and walking problem for the last 3 weeks and he has a lot of memory problems, weakness and lists to one side. I hope the doctor is just being over cautious.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
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    Hi Debbie
    I am glad to hear that the lump was nothing under his tongue and all Lymph Nodes are clear. I do PET every 6 months because doctors keep seeing something that lights there scans up right about the site of my NPC cancer. It’s been doing that for 6 years now and MD Anderson can’t explain it. I have another PET scheduled next month Dec the 8th, I am thinking of cancelling it because it always shows the same thing, just not sure yet.

    I pray that the brain CT will also be clean.

    God Bless
    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
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    PET
    More than likely the PET is residual, at least historically speaking. Thoughts and Prayers on the other...

    Stay Positive,
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #9
    Options
    but the PET
    extended to the brain and didnt light up? there are other possibilities. Stay calm is the best bet right now.
  • luv2cut1
    luv2cut1 Member Posts: 288
    #10
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    Praying . . .
    For you. I really hope the brain scan goes well. PET really doesn't sound too discouraging except to those of us who worry all the time (like me).

    I hope all is well. Hang in there - keep praying - and keep fighting.

    Myka
  • NJR
    NJR Member Posts: 82
    #11
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    PET
    Hi Debbie,
    My heartfelt condolences to the both of you. Like you, I have been living largely in Limbo for the past few months and frankly, it is not a good way to live. I remember as a child I attended a Catholic school and one of the things that always stood out as offensive to me was when the nuns attempted to explain what happened to little babies who died before they were baptized. I remember well how she nonchalantly said, "Oh well, they just go to limbo." (quite a concept for a 7 year old to swallow) It took me another 45 years and a bad case of Cancer to fully grasp what a bad thing Limbo really is.

    Speaking of Limbo, I am now off to visit my surgeon. He is going to explain to me exactly how my last biopsy came back as "Insufficient Sample" when the Pathologist was right there in the operating room and declared it sufficient after two hours and 6 passes.


    Nick
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #12
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    NJR said:

    PET
    Hi Debbie,
    My heartfelt condolences to the both of you. Like you, I have been living largely in Limbo for the past few months and frankly, it is not a good way to live. I remember as a child I attended a Catholic school and one of the things that always stood out as offensive to me was when the nuns attempted to explain what happened to little babies who died before they were baptized. I remember well how she nonchalantly said, "Oh well, they just go to limbo." (quite a concept for a 7 year old to swallow) It took me another 45 years and a bad case of Cancer to fully grasp what a bad thing Limbo really is.

    Speaking of Limbo, I am now off to visit my surgeon. He is going to explain to me exactly how my last biopsy came back as "Insufficient Sample" when the Pathologist was right there in the operating room and declared it sufficient after two hours and 6 passes.


    Nick

    Insufficient Sample
    Maybe your Insurance hasn't paid yet, LOL....

    Just teasing, hope all goes well with minimal need for a more "Sufficient Sample"...

    Best,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #13
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    speechless
    Hi Debbie, I don't have much to offer other than my brother in law's father lived with brain cancer for 15 yrs. I think his heart finally gave out. I also remember reading that the founder of the OCF, (oral cancer Foundation) Board, Brian Hill has survived a METS???? Give his profile a read as I'm sure he had brain cancer, just not sure if it was from his oral cancer or not. Good place to ask also. We both know it hasn't been confirmed yet so lets cross our legs and toes and await the test.
  • ratface
    ratface Member Posts: 1,337 Member
    #14
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    jim and i said:

    balance
    Jim has had a balance and walking problem for the last 3 weeks and he has a lot of memory problems, weakness and lists to one side. I hope the doctor is just being over cautious.

    I had all of those
    Honestly, I had terrible balance problems where I would start veering off to one side as I walked and was constantly unable to distinguish changes in ground height which caused repeated tripping. I still occasionally clip the end of a corner wall with a shoulder. My memory problems were serious as I once found myself not being able to find my child's school, a building which I had frequented for the last eight years. I dismissed it as a side effect of chemo/radiation/mal-nutrition/pain medication syndrome. I think since it is a concern the doctor has to investigate.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #15
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    longtermsurvivor said:

    but the PET
    extended to the brain and didnt light up? there are other possibilities. Stay calm is the best bet right now.

    PET not brain
    Aparently the pet doesn't extend to the brain that is the reason for CT of Brain
  • jim and i
    jim and i Member Posts: 1,788 Member
    #16
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    NJR said:

    PET
    Hi Debbie,
    My heartfelt condolences to the both of you. Like you, I have been living largely in Limbo for the past few months and frankly, it is not a good way to live. I remember as a child I attended a Catholic school and one of the things that always stood out as offensive to me was when the nuns attempted to explain what happened to little babies who died before they were baptized. I remember well how she nonchalantly said, "Oh well, they just go to limbo." (quite a concept for a 7 year old to swallow) It took me another 45 years and a bad case of Cancer to fully grasp what a bad thing Limbo really is.

    Speaking of Limbo, I am now off to visit my surgeon. He is going to explain to me exactly how my last biopsy came back as "Insufficient Sample" when the Pathologist was right there in the operating room and declared it sufficient after two hours and 6 passes.


    Nick

    Praying you get some
    Praying you get some definitive and good news.
  • luv2cut1
    luv2cut1 Member Posts: 288
    #17
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    NJR said:

    PET
    Hi Debbie,
    My heartfelt condolences to the both of you. Like you, I have been living largely in Limbo for the past few months and frankly, it is not a good way to live. I remember as a child I attended a Catholic school and one of the things that always stood out as offensive to me was when the nuns attempted to explain what happened to little babies who died before they were baptized. I remember well how she nonchalantly said, "Oh well, they just go to limbo." (quite a concept for a 7 year old to swallow) It took me another 45 years and a bad case of Cancer to fully grasp what a bad thing Limbo really is.

    Speaking of Limbo, I am now off to visit my surgeon. He is going to explain to me exactly how my last biopsy came back as "Insufficient Sample" when the Pathologist was right there in the operating room and declared it sufficient after two hours and 6 passes.


    Nick

    Limbo is horrible
    Being in limbo is so hard. Praying for you to get some answers soon.

    Myka
  • BrianKrashpad
    BrianKrashpad Member Posts: 188
    #18
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    sweetblood22 said:

    Hoping the hot spot on the
    Hoping the hot spot on the PET scan is just scar tissue or stuff still healing. I also pray that the CT scan is normal, and Jim is ok.

    Yes, remember a hot spot
    Yes, remember a hot spot isn't necessarily cancer, just more cellular activity (at least that's how it was explained to me). My most recent PET showed some activity but the doc went back in and couldn't find anything.

    Prayers and mojo.

    Be well.
  • robinleigh
    robinleigh Member Posts: 297
    #19
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    patiently waiting
    Boy, is it ever hard to wait. One foot in front of the other and try to keep busy. Andy and I are awaiting appts. this week to see if he will be accepted into a clinical trial. His mets are to the bone, so we don't have exactly the same situation as you but, dealing with a metastasis is a whole different ballgame. I certainly hope that Jim's CT is clear.

    Best wishes, Robin
  • Hondo
    Hondo Member Posts: 6,636 Member
    #20
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    robinleigh said:

    patiently waiting
    Boy, is it ever hard to wait. One foot in front of the other and try to keep busy. Andy and I are awaiting appts. this week to see if he will be accepted into a clinical trial. His mets are to the bone, so we don't have exactly the same situation as you but, dealing with a metastasis is a whole different ballgame. I certainly hope that Jim's CT is clear.

    Best wishes, Robin

    The Limbo waiting game

    That is a time I don’t like but it comes every 6 months for me. Should be use to it after 6 years but there are some thing you never get use to I guess.

    Keeping you in prayer
    Hondo
  • Jan Trinks
    Jan Trinks Member Posts: 477
    #21
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    I know the feeling
    Debbie:

    Sorry to hear the pet wasn't clear and the possibility of mets to brain. Will continue in prayer for you and Jim. And I so know where you're coming from. Charlie always did better than me. I was such a basketcase. Keep good thoughts and prayers coming your way! I know that's easier said than done. When we got the news of Charlie's mets; I gave myself 1 day to wallor and then the next day joined him in the fight mode. That's the only way you can do this. Yes, I worried constantly and I didn't expect him to go as quickly as he did after the news; but he would have had a very hard time in the future his onc. told me. I hope and pray that you and Jim have the compassionate docs we had. They were just so super. I'm going to make both the onc. and rad onc. a bunch of goodies to take to their offices during Christmas. They are so appreciative and probably don't get the thanks and appreciation they deserve and beside I like doing it! God Bless and Don't Ever Give Up!

    Jan (Basketcase)

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