Waiting for PET

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Scuddles1
Scuddles1 Member Posts: 2
in Head and Neck Cancer #1

Newly diagnosed HVP+ SCC. I had tonsil stones but it felt different so I elected to have tonsilectomy which revealed the demon. They gave me a loose sketch of what they are thinking until they get PET. if it is negative they want to do TORS and clean up margins  and possibly take a few nodes. If it shows other spots, then radiation. Is the surgery a good idea if the PET is negative?? I have mixed thoughts on it. Wish proton was available near me.

Just trying to get ducks in a row....

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  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #2
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    I had TORS...

    to remove my primary on the base of my tongue followed by radiation.  Most say that surgical resection of a primary tumor is the preferred course of action...followed by radiation and chemo if they can't get it surgically and/or you are high risk.

    TORS wasn't too big a deal...like getting your tonsils out which you've already done...  Hopefully your PET comes back negative and they think it's all localized and hasn't started spreading...then you can make decisions about what the best route of treatments for you are, which can included de-escalation for really early stage disease.

    Welcome to the club...  Brandon

  • wbcgaruss
    wbcgaruss Member Posts: 2,275 Member
    edited July 2019 #3
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    Looks Like

    You are in the situation many of us have faced. The waiting game until we get our results from our latest test. The waiting part really is the hardest. it gives us time to worry about something we can't control anyway. So it looks like no matter what you are going to require some kind of treatment so let's hope it is the least invasive and problematic and leaves no after-effects. God Bless

  • Scuddles1
    Scuddles1 Member Posts: 2
    #4
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    Thanks.....it's quite

    Thanks.....it's quite overwhelming to say the least.

  • Cgarr5
    Cgarr5 Member Posts: 1 Member
    edited July 2019 #5
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    I too am waiting... and waiting.. and waiting.. Ugh!

    I felt a lump in my neck in Feb-Mar time and watched it for a couple of months. Finally went to the Dr. in May to have it looked at and she ordered an US, that led to a recomendation to get a biopsy. I couldn't get into the surgeon until 7/2 for biopsy. That bx was positive for SCC +16.  CT was next, and showed a 6mm nodule at the BOT and the base of my epiglottis but no other involvment but my tonsils do show asymitry so we will see about that.  I have been in the medical field (Radiology-specifically CT for 30 years) This did stun me quite a bit since I have imaged 1000's of Ca pts over the years and have watched the process from the other side of the bed.

    I opted to be referred to Mayo in Phoenix as they have Proton therapy there.  Unfortunately, the Dr I saw initially refused to order the PET since I asked to be referred to Mayo. Control I guess, as it makes no sense to delay what he recommended and knows that the next surgeon will order..... So I wait until I see a physician at Mayo to get the PET. That will be this week. From my research, the TORS is quite successful and I am praying for the best as the physician I am going to has been pioneering the TORS since before it was approved.  I feel very fortunate to have this  and the positron available, if it is needed for me and they can use it for my cancer. Hoping to have a clear picture of my path by the end of this coming week. 

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