Saw the Oncologist today....

phrannie51
phrannie51 Member Posts: 4,716
in Head and Neck Cancer #1

So....there are the two nodes that lit up....but I guess also, there is a tiny little spot on the left pharynx that also lit up, just not like the nodes....nodes were SUV 5, that spot was a 2.7...but Dr. Goodman said that spot and the nodes are "inline"....I didn't know lymph nodes crossed the mid-line, but according to him, they can. He said Dr. Harris (the new radiologist) thinks the nodes are below my radiation line from last time. As far as chemo goes, he doesn't think I'll be needing that, but will know for sure once the pathology comes in from the surgery. Dr. Goodman told me to call the ENT tomorrow, and let him know my feelings about that little spot....that I want it OUT, totally excised...none of this biopsy crap....and then maybe having to go back in and take it....he said don't be passive, to let the ENT know how i feel.  So I'll be calling him tomorrow.  He said he feels this is all left over from before, too small to be seen with a CT/MRI and that it has been growing at a glacier's pace....so it's just showing up now.  I ask about this new radiologist....she came with the new SBRT machine....if it is rads, that's what they'll be using.  That's the same machine that Candi (hwt) got at Mayo. 

Basically, until the pathology from the surgery comes in we won't know about chemo or rads....it'll all depend on what they find.

p

 

Comments

  • MrsBD
    MrsBD Member Posts: 617 Member
    #2
    So

    It's a blessing that things are moving along so quickly for you and that the spots seem to be some small escapees from your previous treatment. I'd want them annihilated this time too.  Give the ENT your best Lady Macbeth imitation. Out with that spot! You're always in my prayers. 

  • Laralyn
    Laralyn Member Posts: 532
    #3
    Yes--tell the ENT what you

    Yes--tell the ENT what you want. I totally understand and I would feel the same way. Get it out! 

    It's great that they can use SBRT! I've been reading a lot about that lately. :-)

  • jcortney
    jcortney Member Posts: 503
    #4
    Get it all out!

    Chemo, might be smart just to get any left over cells.

     

    We're here for you,

     

    Joe

     

     

  • Barbaraek
    Barbaraek Member Posts: 626
    #5
    Sounds like you have

    good doctors and resources available to you and that you're taking a proactive approach to getting out that sneaky spot. I am putting in extra prayers that surgery will be sufficient and that chemo is not needed. If you need radiation it sounds like you access to primo technology. Deep breath Phrannie - we're with you girl!

    barbara

  • kdot2003
    kdot2003 Member Posts: 143
    #6
    A patient with an opinion :)

    A patient with an opinion :)    Huggggs Phrannie.  Wishing you the best treatment plan and a doctor with a good listening ear!  Karen

  • wmc
    wmc Member Posts: 1,804
    #7
    Yep.......

    I agree with you. Most important is to allways tell them how you feel and what you want. They will offer sugestions, but in the end it's your call. I was very much the same and voiced what I wanted. I wanted the tumor out.I just didn't have many choices, but I knew if it is out, it's gone. Thoughts and prayers.

    Bill

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #8
    kdot2003 said:

    A patient with an opinion :)

    A patient with an opinion :)    Huggggs Phrannie.  Wishing you the best treatment plan and a doctor with a good listening ear!  Karen

    Dang!

    Phrannie,

     

    I hate reading stuff like this!  You better be alright, you've been through enough already.  You and I came here just about the same time so I am always interested in how you're doing.  Like the doc said, hopefully it's just left over from the last time.  But I am glad you're very proactive about it.

     

    Let us know what happens next.

     

    Tom

  • avisemi
    avisemi Member Posts: 172
    #9
    glad things are moving! I

    glad things are moving! I will be praying for guidance for the doctors to make the right decisions and give you the appropriate treatment. We have to be our best advocates. I'm from Ecuador and since my dad and most family friends are doctors I grew up with the perspective that doctors know best and to leave it up to them. OH HOW I quickly learned that was not the right way to go!

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    #10
    Talked to my ENT about the "spot"...

    guess he will just biopsy it as it's very close to the carotid artery....and by taking it out, we open another big can of worms....He feels it is from prior radiation, and that it is not cancer.  He said they will get it tested for cancer right there at the time of the surgery.  This is all making me very nervous.....

    Guess the neck dissection will be a modified radical....will have to look that one up....but he said generally people don't have much trouble recovering from that. 

    I'm jumpier than a fart in a skillet....I'm missing Longtermsurvivor....I could count on him to tell me what's up.

    p

  • wmc
    wmc Member Posts: 1,804
    #11
    phrannie51 said:

    Talked to my ENT about the "spot"...

    guess he will just biopsy it as it's very close to the carotid artery....and by taking it out, we open another big can of worms....He feels it is from prior radiation, and that it is not cancer.  He said they will get it tested for cancer right there at the time of the surgery.  This is all making me very nervous.....

    Guess the neck dissection will be a modified radical....will have to look that one up....but he said generally people don't have much trouble recovering from that. 

    I'm jumpier than a fart in a skillet....I'm missing Longtermsurvivor....I could count on him to tell me what's up.

    p

    The spot.......

    If it is something that can grow and that close to the carotid artery I woud want it removed. Yes we all miss Pat and his vast knowledge. We have or had, a member that had a lump and his doctor just blew him off and said it was just from radiation. Well he was wrong and the tumor grew around the carotid artery and was now inoperable, and blocking the blood flow, and the outcome was not good. They could not do anything for him. Phrannie I am not trying to make this worse or alarm you. You do need to know this and make sure it can not grow, and if it can it needs to come out.

    When they do a modified radical neck dissection it means they are not doing all five areas. I had level II~V, they did not do #1 which is under the chin.

    Please forgive me as I do not want to add to nervousness. Truely sorry:

    Bill

  • phrannie51
    phrannie51 Member Posts: 4,716
    #12
    wmc said:

    The spot.......

    If it is something that can grow and that close to the carotid artery I woud want it removed. Yes we all miss Pat and his vast knowledge. We have or had, a member that had a lump and his doctor just blew him off and said it was just from radiation. Well he was wrong and the tumor grew around the carotid artery and was now inoperable, and blocking the blood flow, and the outcome was not good. They could not do anything for him. Phrannie I am not trying to make this worse or alarm you. You do need to know this and make sure it can not grow, and if it can it needs to come out.

    When they do a modified radical neck dissection it means they are not doing all five areas. I had level II~V, they did not do #1 which is under the chin.

    Please forgive me as I do not want to add to nervousness. Truely sorry:

    Bill

    I do trust my ENT...

    and he's not blowing me off...he is going to biopsy it during the neck dissection, so we know what it is or isn't.  He just doesn't want to remove it for nothing, should it not be cancer....as it's in a delicate place.  This could actually be a good plan....if I need to go to somewhere else to have it removed...like MDA or something, I can do that.  The ENT says he doesn't think it is cancer...as it's asymmetrical, and has never showed up on any of the contrast MRI's....he thinks it's from having rads before.  All I can do is hope and wait...then deal with it when I find out.

    p

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #13
    fix'er up

    Phrannie,

    With Dr. Goodman, Dr. Harris, Dr. Lola and Dr. Phrannie, you’ve got a winning team.

    Best of luck my good friend.

    Matt

  • wmc
    wmc Member Posts: 1,804
    #14
    phrannie51 said:

    I do trust my ENT...

    and he's not blowing me off...he is going to biopsy it during the neck dissection, so we know what it is or isn't.  He just doesn't want to remove it for nothing, should it not be cancer....as it's in a delicate place.  This could actually be a good plan....if I need to go to somewhere else to have it removed...like MDA or something, I can do that.  The ENT says he doesn't think it is cancer...as it's asymmetrical, and has never showed up on any of the contrast MRI's....he thinks it's from having rads before.  All I can do is hope and wait...then deal with it when I find out.

    p

    Your ENT is checking and doing everything right.

    Phrannie you have a good ENT and is taking this serious and taking all precautions. I just wish the other one would have done the same.

    Bill

  • lifeisDHA
    lifeisDHA Member Posts: 64
    #15
    I will pray it's nothing

    but some scar from last radiation.

  • Hondo
    Hondo Member Posts: 6,636 Member
    #16
    phrannie51 said:

    I do trust my ENT...

    and he's not blowing me off...he is going to biopsy it during the neck dissection, so we know what it is or isn't.  He just doesn't want to remove it for nothing, should it not be cancer....as it's in a delicate place.  This could actually be a good plan....if I need to go to somewhere else to have it removed...like MDA or something, I can do that.  The ENT says he doesn't think it is cancer...as it's asymmetrical, and has never showed up on any of the contrast MRI's....he thinks it's from having rads before.  All I can do is hope and wait...then deal with it when I find out.

    p

    Hi P

     

    As you said all we can do is to hope and deal with it as we find out more able it. I am sorry you are having to deal with it again but keep in mind I am now at my 10 year mark from my second treatment of NPC, so there is hope. The side effects suck but being alive it what matters the most. Sometimes you need to kick its butt twice before it leaves you alone.

     

    Will continue to keep you in my prayers.

     

    God Bless

    Tim

     

     

     

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #17
    I''m keeping up with you ... :)

    Just checking in on you Phrannie ...keeping up with things ..... 

    Whispered prayers....and each morning I see your name on my bathroom mirror and I whisper another prayer!

     

    Tim6003

  • donfoo
    donfoo Member Posts: 1,773 Member
    #18
    What a shock

    P,

    Catching back up here after an insane month on the job. So shocked and sorry to hear about the recurrence but isolated to the two small nodes around the collarbone. Any cancer is crap but this was caught early and seems very treatable. Waiting really make it hard to keep things on an even keel but you can think about how "good" things are when compared to how back it could have been. Hope that kncoks off at least one percent on scanxiety score. I'm right in the pack wishing you well. Don

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