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finz2lft
finz2lft Member Posts: 43
in Head and Neck Cancer #1
I had stage IV-a head and neck cancer with a tumor under my tongue and a 6.5 cm tumor in my left lymph node. I had 35 rads, 7 concurrent chemos and a selective neck dissection in Nov 2010. Now, my Radiologist has found a tumor in my Larynx. He has scheduled a PET Scan for this Wednesday, and referred me to Chapel Hill for a Larynscopy. He had referred me to a local ENT Office, but the ENT doctor told him if this was going to involve surgery to go ahead and send me to Chapel Hill where they did my dissection earlier. So, I am going to Chapel Hill this Thursday. I am a bit scared at this early stage. Why did he order a PET Scan so early on, and a Larynscopy so soon. What bothers me is when the local ENT told him if it involved surgery to go ahead and send me to Chapel Hill; is that it tells me my Radiologist thinks the situation is not good, and will involve removal of the tumor he found. What should I think? Any thoughts anyone?

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  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
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    Hi finz
    I believe he has ordered the PET to first see if the tumor is or is not cancer. And the Larynscopy to get a better look at the tumor from a professional stand point and see what is involved if surgery is needed to have it removed. At this point try not to be too scared until you have more facts in you hand, believe me we all know how hard the wait it at times.

    Wishing you the best
    Hondo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
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    LLoyd Man
    Hi LLoyd, no use in trying to tell you not to worry, I know that I would. But as Hondo did say, as far as what you've said, nothing has confirmed it as cancer. So try to keep that hope in your thoughts and prayers.

    Also as for the PET, it will also give them an idea just what they are looking at, plus if you have anything else going on in other areas. I had an initial PET right after they took my tonsils out. At that time I still had the tumor (seconday, tonsils were primary). So in your case, it's not out of the norm to have a PET upfront.

    As for the surgery, it could be merely that the local ENT feels that since Chapel Hill did the original, they are more familiar with you and your case already.

    I'm scheduled for a two year post treatment PET myslef on the 6th...pretty nervous myself.

    Anywayz, you know how to reach me if needed....

    Keep the faith brother...

    Thoughts & Prayers,
    John
  • hedgpeth27
    hedgpeth27 Member Posts: 11
    #4
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    Hondo said:

    Hi finz
    I believe he has ordered the PET to first see if the tumor is or is not cancer. And the Larynscopy to get a better look at the tumor from a professional stand point and see what is involved if surgery is needed to have it removed. At this point try not to be too scared until you have more facts in you hand, believe me we all know how hard the wait it at times.

    Wishing you the best
    Hondo

    Great Advice
    Great advice Hondo. I too will be thinking a praying for you.
  • luv2cut1
    luv2cut1 Member Posts: 288
    #5
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    Skiffin16 said:

    LLoyd Man
    Hi LLoyd, no use in trying to tell you not to worry, I know that I would. But as Hondo did say, as far as what you've said, nothing has confirmed it as cancer. So try to keep that hope in your thoughts and prayers.

    Also as for the PET, it will also give them an idea just what they are looking at, plus if you have anything else going on in other areas. I had an initial PET right after they took my tonsils out. At that time I still had the tumor (seconday, tonsils were primary). So in your case, it's not out of the norm to have a PET upfront.

    As for the surgery, it could be merely that the local ENT feels that since Chapel Hill did the original, they are more familiar with you and your case already.

    I'm scheduled for a two year post treatment PET myslef on the 6th...pretty nervous myself.

    Anywayz, you know how to reach me if needed....

    Keep the faith brother...

    Thoughts & Prayers,
    John

    Laryngoscopy
    Pat is 20 months out and during his last scope his ENT surgeon found something on his larynx. Pat had a PET, an excisional biopsy and panendoscopy right away. PET was negative and tumor was benign. Hoping the same for you.

    Pat was originally thinking of doing his follow ups with a surgeon at CU where he had his chemoradiation instead of with the surgeon that did his neck dissection. The CU surgeon advised us not to switch because of the previous surgeon's familiarity with Pat's case. That could explain why you were advised to go to Chapel Hill.

    Just for the record, we we're advised that if the tumor did have to be removed it could've done with minimal damage to his voice. Pat 's was very small. Hopefully since you have been checked regularly, yours is small as well.

    Thoughts and prayers with you.

    Myka
  • Pam M
    Pam M Member Posts: 2,196
    #6
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    Very Sorry To Hear
    I'm sorry to hear about the "new" mass. I know that even if it's (and I'm hoping) nothing to be concerned about, it'll be a worry to you until you know it isn't. I know how hard it can be to try to tell yourself it's nothing to worry about. I know a couple months ago, I was pretty anxious about changes in my throat - until I got test results back. That being said, I hope you can be wiser than me, and not borrow trouble. Worry doesn't make anything better or easier.
    Have you had a PET since your treatment ended in November, or will the upcoming one be the first? I know some folks develop scar tissue that raises false alarms. For me, it was lingering inflammation from my neck dissection, according to my ENT.

    Also, at the beginning of my "journey", my ENT (at this point, he was the the one who did my initial scoping and needle aspiration biopsy of a lymph node "growth") referred me to a surgeon at a larger facility. I met with the surgeon, but surgery up front turned out to not be an option for me. So, I was sent to a "bigger" surgeon, but ended up not needing him. After treatment, when it turned out that I would need the modified dissection, my original ENT did the work with a partner.

    I'm also wondering if the local ENT in your case is simply saying you should go back to the folks who've already cut on you because sometimes surgeons have their personal spin on procedures, and he thinks it's easier to re-visit your own work than do a round two someone else's. I'd take comfort in the ENT's "If" in his "If it involves surgery, send him to Chapel Hill".

    Really hoping your worrying for nothing.
  • Dav1965
    Dav1965 Member Posts: 132
    #7
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    Finz
    Who is your doctor in Chapel Hill? That is where i go for my cancer. I see Dr Hackman. I think they have a great oncology team. I trust them completly. I know i would not be here if it was not for them. I go back August 10th. Like it was said earlier try and relax as much as possible and remember you are seeing some of the best doctors in the world. If you need me let me know. God blesss. David
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #8
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    I was told
    I was told many years later that cancer was on my pharynx by 6 doctor's that scoped me. Non of them had any doubt. I had a PET scan and scoped by the doctors on a tumor board all in same day. From the day they found it took 10 days to the biopsy. The doctor wanted to go in and take a biopsy. When he went in to get all they found was infection called congronocrisis, there was alot of swelling and very hard to swallow, also my voice was very hoarse that started days prior to finding. Necrosis is a side effect from radiation where the area some how get damaged and can not heal do to the blood vessel damage from radiation. They found my by accident when cleaning my hears I was hoarse and he said he would scope me and that is when it start.

    Keep in mind that if it is cancer the only way they can treat is by surgery as you can not have any more radiation in that spot that had been in the radiation zone prior. They were certain I was going to have surgery also.

    My treatment for the necrosis was IV antibiotic for 9 weeks three time a day with part way into iv I did 40 HBO treatments. Took many months to treat and slow recovery but doing fine now.

    Not Cancer until they Biopsy and get results!

    John
  • Glenna M
    Glenna M Member Posts: 1,576
    #9
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    Fear
    I'm so sorry that you are going through all of this but I won't tell you not to worry because we all do everytime there is anything suspicious in our scans or scopes.

    All I can tell you is to try to keep yourself occupied and your mind busy to keep yourself from dwelling on this. We all know too well that the waiting is the hardest part.

    You will be in my prayers that this turns out to be nothing serious.

    Stay strong,
    Glenna

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