reoccurance tyroid cancer

mpatrix
mpatrix Member Posts: 8
edited March 2014 in Thyroid Cancer #1
In may of 2009 i had a complete tyroid removal.And again in june of this year i had to have lymp nodes removed on both sides of my neck called a radical disection. My doctors told me they got everything and to my big surprise that did not happen... I went in for my routine follow tests of a whole week of injections and ultrasounds blood work and body scan. Iodine uptake on the body scan did not show anything but the ultrasound shows 7 new growths on my lymp nodes that measure from 1.5 cm to 2.5 cm.When the dr. checks me out he can feel the lumps. Now i have to speak with the surgeon again to see if he wishes to go back in or if they will just send me to mayo clinic in Minn. for alcohol ablation since the radiation ablation did not work the first time. This is just getting old i don't even have the feeling back on my right side yet from my last surgery.
I see from what i'm reading i'm no rare case it's happened to quite a few people out there.
I just want to hear how you all are dealing with this it's driving me crazy.

Comments

  • sunnyaz
    sunnyaz Member Posts: 582
    #2
    Did they test your Lymph nodes for the B-RAF mutation gene? Maybe you should ask your doctor about this. This gene makes it less likely for you to uptake and respond to RAI. It also makes the cancer more aggressive. About 50% of people have it. I tested positive for the gene after my Lymph node dissection. Total Thyroidectomy in November of 2009 then Lymphectomy in June 2010. Mine was Papillary cancer and although they say it is very curable, the mutation gene makes it much more difficult to treat. I wish I had known about the Alcohol Ablation before my second surgery if it's even available where I live. I would check into it especially if you test positive for the B-RAF.
  • lynn2318
    lynn2318 Member Posts: 41
    #3
    What type?
    Do you mind telling me what type of thyroid cancer you had?
  • mpatrix
    mpatrix Member Posts: 8
    #4
    sunnyaz said:

    Did they test your Lymph nodes for the B-RAF mutation gene? Maybe you should ask your doctor about this. This gene makes it less likely for you to uptake and respond to RAI. It also makes the cancer more aggressive. About 50% of people have it. I tested positive for the gene after my Lymph node dissection. Total Thyroidectomy in November of 2009 then Lymphectomy in June 2010. Mine was Papillary cancer and although they say it is very curable, the mutation gene makes it much more difficult to treat. I wish I had known about the Alcohol Ablation before my second surgery if it's even available where I live. I would check into it especially if you test positive for the B-RAF.

    thanks i'm going to have
    thanks i'm going to have them check into that B-RAF gene ...
    i have an appointment with an ENT surgeon on the 27th of october ....sounds like ill be back in the OR again by the second week in november i sure hope it's after opening day of deer season.
    The doctors did say they won't do the radiation again due to my body is unresponsive to the procedure.So i begged my surgeon to try one more time with the neck discection due to i don't have the funds to drive 600 miles for the consult and then a week later would be the procedure. and all the follow up appointments.
    I just find it so weird they say it's not hereditary, but my dad has had it, my twin sister, my older sister and now me...now tell me it's not something thats hereditary
  • mpatrix
    mpatrix Member Posts: 8
    #5
    lynn2318 said:

    What type?
    Do you mind telling me what type of thyroid cancer you had?

    type
    papillary carcinoma.....hope i spelled that right
    still have my lymph nodes still test possitive for it
  • miladyx
    miladyx Member Posts: 85
    #6
    mpatrix said:

    type
    papillary carcinoma.....hope i spelled that right
    still have my lymph nodes still test possitive for it

    how are your father and...
    .... sisters?
  • mpatrix
    mpatrix Member Posts: 8
    #7
    miladyx said:

    how are your father and...
    .... sisters?

    They are good removed
    They are good removed thyroid had there treatment and no reoccurace. I'm guessing my body is just as stubborn as I am if not worse.

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