cytome/ pappilary thyoid cancer

kmt624
kmt624 Member Posts: 10
edited March 2014 in Thyroid Cancer #1
cytome/ pappilary thyoid cancer

I am 2 weeks out from a total thyroidectomy and lymph node dissection (18 lymph nodes removed and 16 were cancerous.) Has anyone else had that many lymph nodes involved? Also, I would like some input on distant metastasis, If it is common etc, I am very concerned about that. I have been taking cytomel since my surgery and I am exhausted, so tired I feel like I have the flu. Is this normal? Also, what is it like when they take you off your meds to prepare for RAI treatment. I am hoping someone can share their experience with me. Thank you in advance.

Comments

  • Phyllis900
    Phyllis900 Member Posts: 21
    #2
    Hello
    i had total thyroidectomy last Nov, and i had my lymph nodes removed too( out of 96 lmyph nodes removed, 20++ were cancerous.)As for me, i am always EXTREMELY tired. I read about other thyca patients too, they all feel tired too. So, i supposed this is only normal for us. I had my first RAI treatment(150 mCi) done in Jan. I took thyrogen shots, so i didn't stop my synthroid. But i wan on low iodine diet for a month( it tooks forever before i get my thyrogen. I am currently on low iodine diet again( for my second RAI, but i guess maybe has to postponed my treatment date, since my thyrogen is not here yet.)

    You are not alone. Many of us here shared the same situation you are in now. Get well soon!:)
  • miladyx
    miladyx Member Posts: 85
    #3
    Phyllis900 said:

    Hello
    i had total thyroidectomy last Nov, and i had my lymph nodes removed too( out of 96 lmyph nodes removed, 20++ were cancerous.)As for me, i am always EXTREMELY tired. I read about other thyca patients too, they all feel tired too. So, i supposed this is only normal for us. I had my first RAI treatment(150 mCi) done in Jan. I took thyrogen shots, so i didn't stop my synthroid. But i wan on low iodine diet for a month( it tooks forever before i get my thyrogen. I am currently on low iodine diet again( for my second RAI, but i guess maybe has to postponed my treatment date, since my thyrogen is not here yet.)

    You are not alone. Many of us here shared the same situation you are in now. Get well soon!:)

    hi Phyllis!
    may i ask why you are going through another RAI treatment 6 months after the first? did the doctors find more cancer?
  • Phyllis900
    Phyllis900 Member Posts: 21
    #4
    miladyx said:

    hi Phyllis!
    may i ask why you are going through another RAI treatment 6 months after the first? did the doctors find more cancer?

    i am not really sure about
    i am not really sure about it too. The first time when i had the RAI, my doctor told me that i need at least 3 times of the treatment( because that's the maximum for a human body). Mine cancer has spread to my blood vessals. The doctor also said that i might need another kind of treatment is the RAI doesn't work. We'll see...
  • miladyx
    miladyx Member Posts: 85
    #5
    Phyllis900 said:

    i am not really sure about
    i am not really sure about it too. The first time when i had the RAI, my doctor told me that i need at least 3 times of the treatment( because that's the maximum for a human body). Mine cancer has spread to my blood vessals. The doctor also said that i might need another kind of treatment is the RAI doesn't work. We'll see...

    you may want to ask your doctor...
    ... about this... not everyone needs maximum dosages even if it has spread to lymph nodes and all. it is also important to know what your tg level is and what trend it followed following your first radiation.

    do you have metastasis anywhere else like lungs? This would justify repeated RAI treatments.

    I do not know your age but especially if you are young, some doctors will refrain from giving RAI every 6 months but rather will try to find the cancer via scans and surgically remove it.

    also are you seeing an endocrinologist or an oncologist? endocrinologists are the ones that are most versed in treating thyca. I would suggest that you dont leave everyting to the doctors and be your own advocate. Doctors are human too after all and they do see hundreds of patients every day.
  • Phyllis900
    Phyllis900 Member Posts: 21
    #6
    miladyx said:

    you may want to ask your doctor...
    ... about this... not everyone needs maximum dosages even if it has spread to lymph nodes and all. it is also important to know what your tg level is and what trend it followed following your first radiation.

    do you have metastasis anywhere else like lungs? This would justify repeated RAI treatments.

    I do not know your age but especially if you are young, some doctors will refrain from giving RAI every 6 months but rather will try to find the cancer via scans and surgically remove it.

    also are you seeing an endocrinologist or an oncologist? endocrinologists are the ones that are most versed in treating thyca. I would suggest that you dont leave everyting to the doctors and be your own advocate. Doctors are human too after all and they do see hundreds of patients every day.

    I am seeing an endo, i am
    I am seeing an endo, i am not sure whether the cancer spread to my lungs yet. But pathology report shows that in order for a tumor to grow as big as mine( i have 2 size of an egg, and dozens on smaller one), it will need more than ten years. i am now 25 years old.
  • miladyx
    miladyx Member Posts: 85
    #7
    Phyllis900 said:

    I am seeing an endo, i am
    I am seeing an endo, i am not sure whether the cancer spread to my lungs yet. But pathology report shows that in order for a tumor to grow as big as mine( i have 2 size of an egg, and dozens on smaller one), it will need more than ten years. i am now 25 years old.

    well the good news is...
    ... your age is on your side. Younger people tend to respond more favorably to the treatment.

    wish you the best of luck for your upcoming treatment. I will keep in touch.

    where are you located?
  • Phyllis900
    Phyllis900 Member Posts: 21
    #8
    miladyx said:

    well the good news is...
    ... your age is on your side. Younger people tend to respond more favorably to the treatment.

    wish you the best of luck for your upcoming treatment. I will keep in touch.

    where are you located?

    i am in New Jersey. How bout
    i am in New Jersey. How bout u? Can you tell me a little bout u too?
  • miladyx
    miladyx Member Posts: 85
    #9
    Phyllis900 said:

    i am in New Jersey. How bout
    i am in New Jersey. How bout u? Can you tell me a little bout u too?

    i am in the northeast as well...
    ... and i have a relative diagnosed with thyroid cancer so i did plenty of research, doctor searching for that reason... if you give me your email address, id be happy to keep in touch.
  • kmt624
    kmt624 Member Posts: 10
    #10
    Phyllis900 said:

    i am not really sure about
    i am not really sure about it too. The first time when i had the RAI, my doctor told me that i need at least 3 times of the treatment( because that's the maximum for a human body). Mine cancer has spread to my blood vessals. The doctor also said that i might need another kind of treatment is the RAI doesn't work. We'll see...

    Hi Phyllis,
    What is the
    Hi Phyllis,

    What is the other treatment your doctor was talking about if the RAI doesn't work? I was told I may need RAI more than once as well. Take care.
  • Phyllis900
    Phyllis900 Member Posts: 21
    #11
    kmt624 said:

    Hi Phyllis,
    What is the
    Hi Phyllis,

    What is the other treatment your doctor was talking about if the RAI doesn't work? I was told I may need RAI more than once as well. Take care.

    Sorry about the late reply:)
    i haven't been logging on to CSN these few days. My endo did say something bout the alternate treatment if the RAI doesn't work,but she didn't specify which treatment it will be.

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