recurrence??

debbiejeanne
debbiejeanne Member Posts: 3,102 Member
in Head and Neck Cancer #1
Hi all, I used to come here everyday but got away from it after the first year, no reason, just didn't come.
Oh, my cancer was of the lynax and I had 35 rad trmnts in Oct. 2009. I still suffer with the dry mouth and things still gettng stuck in my thorat.
My question is: I got a scan back that said HIGHLY SUSPITIOUS FOR RECURRENCE. Had anyone else received a report like this? There is also something showing in my thyroid and right lung. The spot in the lung is only 5 mm but it still worries me. Nobody knows what the spot is but have chosen to watch it and get a chest exray or CT every 6 months. I scheduled to have a ultra sound done on my thyroid. I am wondering if you have had this experience and if so, how did it go?
I know I'll get some good answers here and I did when I was fighting the cancer the first time. Thank you for your help.
PS, do you know if Chefdaddy still hangs around here? I'd love to know how he is doing.
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Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Lung spots
    I have one of those that the radiologist was absolutely sure was a recurrance. My Oncologist and I elected to just repeat the scan 6 months later. It was a little bigger. The dirty little secret is that the CT slices are far enough apart that the change in size may just indicate they sliced through a different spot on the lump. So rather than panic, we repeated it again. It was smaller that time. It turned out to be nothing at all.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    Hi You...
    Sorry for the drama on your scan report..., has anyone officially gone over it with you (ordering MD)...ENT, etc...?

    It's definitely a report that I'd want my attending MD to go over with me for an official read.

    As for Mike (Chefdaddy), he was on here a few weeks ago...his son was not doing well at all.

    ChefDaddy

    Hopefully some others will chime in with better responses to your questions...

    Thoughts & Prayers,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    longtermsurvivor said:

    Lung spots
    I have one of those that the radiologist was absolutely sure was a recurrance. My Oncologist and I elected to just repeat the scan 6 months later. It was a little bigger. The dirty little secret is that the CT slices are far enough apart that the change in size may just indicate they sliced through a different spot on the lump. So rather than panic, we repeated it again. It was smaller that time. It turned out to be nothing at all.

    Pat

    All of that has happened to me, 'No change"
    I have four lung spots between 4mm and 9mm. I also have a nodule on my thyroid. It does scare the beans out of you and you are just going to have to wait the six months. It's going to be a bit harrowing but you can do this. I'm going on three years now with, "No Change" You and I will be "No Changers" instead of "NED". Just means those spots were there prior to the cancer and were caused by something else. You must accept that this is a possibility and keep one foot in front of the other.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #5
    longtermsurvivor said:

    Lung spots
    I have one of those that the radiologist was absolutely sure was a recurrance. My Oncologist and I elected to just repeat the scan 6 months later. It was a little bigger. The dirty little secret is that the CT slices are far enough apart that the change in size may just indicate they sliced through a different spot on the lump. So rather than panic, we repeated it again. It was smaller that time. It turned out to be nothing at all.

    Pat

    thank you
    Pat, thank you so much. I love this site b/c pretty much everyone understands what is going on. Thank you again.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #6
    ratface said:

    All of that has happened to me, 'No change"
    I have four lung spots between 4mm and 9mm. I also have a nodule on my thyroid. It does scare the beans out of you and you are just going to have to wait the six months. It's going to be a bit harrowing but you can do this. I'm going on three years now with, "No Change" You and I will be "No Changers" instead of "NED". Just means those spots were there prior to the cancer and were caused by something else. You must accept that this is a possibility and keep one foot in front of the other.

    waiting
    Rat, you know how hard it is to wait....lol. You're right tho. I will wait and hope for good news, NO CHANGE!! Thank you for replying and I hope all is well with you.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    Skiffin16 said:

    Hi You...
    Sorry for the drama on your scan report..., has anyone officially gone over it with you (ordering MD)...ENT, etc...?

    It's definitely a report that I'd want my attending MD to go over with me for an official read.

    As for Mike (Chefdaddy), he was on here a few weeks ago...his son was not doing well at all.

    ChefDaddy

    Hopefully some others will chime in with better responses to your questions...

    Thoughts & Prayers,
    John

    ty
    Hey, Skiffin16. thank you for replying. I just saw the doctor (oncologist) today about the report and i had written down my questions and we went over all my questions. His educated guess is that there is a recurrent and will require surgery. He said that i will most likely lose my voice box. He said they couldn't do chemo b/c it can't get into the deep tissue it needs to be in. I am really afraid b/c i can't imagine my life not being able to speak. but worse is that he said i will most likely have a trake. That has me petrified!!! I've talked to some on here who had one and he was completely depressed with having one and with the problems that comes with it. I will just keep praying. The doc said he can't say 100% but of cases that came thro his office had done what I've described. I am schedled for the ENT to do 1-4 bioposy on Monday 2-13-12.
    I hope all is well with you. Its good to see people who have kept the cancer abay. It shows there is hope.
    Take care,
    debbie
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Hi Debbie
    As with all of us recurrence is alway a possible but something that we hope will never happens. For now try not to let it worry you until you get bettey infomation, I know this is hard but make it a matter of prayer. I talked to Chefdaddy Mike a few days ago, he is doing as good as possible in dealing with his Sons condition.

    As you know my prayers will be there for you.
    Tim Hondo
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #9
    Hondo said:

    Hi Debbie
    As with all of us recurrence is alway a possible but something that we hope will never happens. For now try not to let it worry you until you get bettey infomation, I know this is hard but make it a matter of prayer. I talked to Chefdaddy Mike a few days ago, he is doing as good as possible in dealing with his Sons condition.

    As you know my prayers will be there for you.
    Tim Hondo

    mike
    Hondo, thank you so much for the update. It makes me really sad to know his son is not doing well. I will definitely put the family in my prayer. I'm glad Mike is still here, I was really afraid to ask. I don't mean to be nosy but is his son's cancer bak? That family has been thru sooooooooo much.
    Please let Mike know that he and his family are in my prayers.
    Sincerely,
    deb
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #10
    ratface said:

    All of that has happened to me, 'No change"
    I have four lung spots between 4mm and 9mm. I also have a nodule on my thyroid. It does scare the beans out of you and you are just going to have to wait the six months. It's going to be a bit harrowing but you can do this. I'm going on three years now with, "No Change" You and I will be "No Changers" instead of "NED". Just means those spots were there prior to the cancer and were caused by something else. You must accept that this is a possibility and keep one foot in front of the other.

    I also have nodules in my
    I also have nodules in my thyoid. We are going to watch them and test them every 6 months.

    Thanks rat,
    deb
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #11
    Debbiejeanne, sorry to read
    Debbiejeanne, sorry to read this. Please know that you are in my prayers.
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #12
    sweetblood22 said:

    Debbiejeanne, sorry to read
    Debbiejeanne, sorry to read this. Please know that you are in my prayers.

    thank you sweet. good to
    thank you sweet. good to see you're still posting.
    deb
  • Pam M
    Pam M Member Posts: 2,196
    #13
    Hi DebbieJeanne
    Sorry you're going through such a stressful time right now. Just read your post, so am too late to hope for an easy biopsy - hope you're recovering smoothly and quickly, though. Also hoping you'll be like ratface, and just know that you have "something uncommon" that is not cancer. I do know several folks here have things like scar tissue show up as a suspicious mass. Do well
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #14
    Pam M said:

    Hi DebbieJeanne
    Sorry you're going through such a stressful time right now. Just read your post, so am too late to hope for an easy biopsy - hope you're recovering smoothly and quickly, though. Also hoping you'll be like ratface, and just know that you have "something uncommon" that is not cancer. I do know several folks here have things like scar tissue show up as a suspicious mass. Do well

    thanks for hoping for the
    thanks for hoping for the best but the results are in and the cancer is back. I'm having surgery hopefully this coming Tuesday. I can't wait to get it donw and overwith. They will be removing all my voice box and everything around it. I will have a trake for the rest of my life. That sounds bad, but at least I'll be alive. Thank you for the good wishes and I wish the same for you!
    deb
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #15
    debbiejeanne said:

    waiting
    Rat, you know how hard it is to wait....lol. You're right tho. I will wait and hope for good news, NO CHANGE!! Thank you for replying and I hope all is well with you.

    Hi rat, i hope u r doing
    Hi rat, i hope u r doing well. i think you replied to one of my post about what i should get from the hospital when I leave after the trake surgery. I printed it off so I'd have it to ask the doctors but i can't find it now. I'm sorry to trouble you but could you send it to me again? I'm sorry to be a pain but I really wanted to disuss it with my doctor. I would greatly appreciate your help. Thanks much!
    deb
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #16
    Hondo said:

    Hi Debbie
    As with all of us recurrence is alway a possible but something that we hope will never happens. For now try not to let it worry you until you get bettey infomation, I know this is hard but make it a matter of prayer. I talked to Chefdaddy Mike a few days ago, he is doing as good as possible in dealing with his Sons condition.

    As you know my prayers will be there for you.
    Tim Hondo

    thank you everyone for your
    thank you everyone for your well wishes. I most definitely appreciate each and every one.
    deb
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #17
    Hondo said:

    Hi Debbie
    As with all of us recurrence is alway a possible but something that we hope will never happens. For now try not to let it worry you until you get bettey infomation, I know this is hard but make it a matter of prayer. I talked to Chefdaddy Mike a few days ago, he is doing as good as possible in dealing with his Sons condition.

    As you know my prayers will be there for you.
    Tim Hondo

    thank you everyone for your
    thank you everyone for your well wishes. I most definitely appreciate each and every one.
    deb
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #18
    Hondo said:

    Hi Debbie
    As with all of us recurrence is alway a possible but something that we hope will never happens. For now try not to let it worry you until you get bettey infomation, I know this is hard but make it a matter of prayer. I talked to Chefdaddy Mike a few days ago, he is doing as good as possible in dealing with his Sons condition.

    As you know my prayers will be there for you.
    Tim Hondo

    thank you all
    thank you everyone for your well wishes. I most definitely appreciate each and every one.
    deb
  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #19
    Hondo said:

    Hi Debbie
    As with all of us recurrence is alway a possible but something that we hope will never happens. For now try not to let it worry you until you get bettey infomation, I know this is hard but make it a matter of prayer. I talked to Chefdaddy Mike a few days ago, he is doing as good as possible in dealing with his Sons condition.

    As you know my prayers will be there for you.
    Tim Hondo

    thank you all
    thank you everyone for your well wishes. I most definitely appreciate each and every one.
    deb
  • IAmStrong
    IAmStrong Member Posts: 58
    #20
    debbiejeanne said:

    thanks for hoping for the
    thanks for hoping for the best but the results are in and the cancer is back. I'm having surgery hopefully this coming Tuesday. I can't wait to get it donw and overwith. They will be removing all my voice box and everything around it. I will have a trake for the rest of my life. That sounds bad, but at least I'll be alive. Thank you for the good wishes and I wish the same for you!
    deb

    Praying!!!
    Debbie, I will be thinking of you in the coming weeks. Like we have learned new "normals", you too will arrive at this with the loss of your larnyx and a permanent trach. You will have a "new voice", and I am Confident, it shall be heard. Bless You and Yours.

    Linda
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #21
    debbiejeanne said:

    thanks for hoping for the
    thanks for hoping for the best but the results are in and the cancer is back. I'm having surgery hopefully this coming Tuesday. I can't wait to get it donw and overwith. They will be removing all my voice box and everything around it. I will have a trake for the rest of my life. That sounds bad, but at least I'll be alive. Thank you for the good wishes and I wish the same for you!
    deb

    take it one step at a time debbiejeanne
    Anticipation is always the worst part of these bad things. Just keep putting one foot in front of the other. You can do it.

    Pat

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