Recurrent papillary cancer possibly due to insufficient dose of RAI-131 for ablation?

mommy mae ann
mommy mae ann Member Posts: 3
edited March 2014 in Thyroid Cancer #1
Hi,

Glad to find a site and discussion board like this... I'm new on this site so please bear with me.

I'm 36 yrs old, diagnosed with a nodule (abt 1.8cm) suspected of malignancy 2yrs ago. I had neartotal thyroidectomy same year, and the nodule was found positive of papillary CA. About 2 months after, I had I-131 RAI therapy, dosage is 100mci, to ablate remaining thyroid tissues. Whole body RAI scan using 1mci showed negative results.

Succeeding tests (i.e. TSH, TG, anti-tg, scan, etc.) were done on a regular basis after that. I had 3 TG tests (suppressed; I was on Eltroxin 150) which were below 2.0 but have been increasing, highest was 1.915 as of Dec. 2009. This prompted my endocrinologist to subject me to other tests. I had repeat TG in January 2010 (unsuppressed this time, off on Eltroxin) and level is 127. Whole body RAI scan (with 1mci dose) same month generated clear results though. Neck ultrasound was ordered after, and there a nodule was found on my left thyroid, same spot where I had one 2 yrs ago. Ultrasound guided FNAB was also ordered, and diagnosis result was "cellular follicular lesion." Also had CT scan which confirmed presence of a nodule.

Thus, I had repeat completion thyroidectomy with frozen section in March 23, 2010. Surprisingly though, according to my surgeon, the nodule was nowhere to be found. What was there instead are clusters of small nodes (subtrachea) which after frozen section, turned out positive of papillary CA, thus taken out. Thus, there was no new nodule after all; rather a metastasis on nearby lymph nodes. My surgeon also toook sample of level 6 and level 3 lymph nodes; thank God it turned out negative.

I'm currently out of Eltroxin and on no-iodine diet, as ordered by my endoc, in preparation for my RAI whole body scan on 1st week of May (6 weeks post repeat-thyroidectomy), together with other blood tests like TSH/TG/anti-TG. Praying that results of which would be favorable...

My doctors suspects that the RAI therapy I had 2 years ago was not successful in fully ablating my thyroid remnants, probably the dosage was just absorbed by the remaining thyroid tissue (remember, i had near total thyroidectomy, not total, 2 yrs ago). The latter was fully ablated, as my right thyroid lobe which contained the remaining tissue has been consistently empty. Do you think this is the case indeed?

Results of the tests above by 1st week of May will determine next steps and treatments for me. I was told offhand though that I might just need to have another RAI-131 therapy soon.

That said, I'm concerned as to what RAI-131 therapy dosage the doctor will give me the second time around, and if it would be sufficient enough. I'd like to ensure that it won't be a "textbook" approach, like it seemed to be the first round I had it. Wondering as well how successful it can be to fully eradicate papillary CA like in my case, when it seemed to "recur" and/or metastasized faster than expected -- in just 2 years. Anyone who had similar experience, or have knowledge around this?

Thank you in advance for whatever information and help that you can provide. I would certainly appreciate it.

Mae Ann

Comments

  • MLG
    MLG Member Posts: 52
    #2
    RAI amounts you get
    A nuclear med nurse told me that if the cancer is just in the thyroid you get a dose of 100...if it is in thyroid and lymph nodes 150...if it has spread beyond that you get 200.

    I had TT and lymph node removal and mine was 150.

    I don't know if this is standard are just around Illinois.

    My body scan after my TT in August 2008 was clear and my thyroglobulin has been nondetectable at 0.2 the whole time.
    A year and a half later my thyroglobulin is a 14 which is an indication that it is back.
    Waiting to hear what to do next.

    From reading other posts it seems that it comes back a lot more than what I thought.
    I thought I would be going a long time w/out it ever reoccurring but it doesn't look that way.
  • butterfly123
    butterfly123 Member Posts: 52
    #3
    RAI dosage
    Hi Mae Ann-

    After TT, the docs typically will do RAI treatment if there is any detecable TG level in your blood. Especially with having TC in both lobes and lymph nodes it is probably a good idea to have the RAI treatment. The endos will then monitor your TG level and use it as marker for recurrent thryoid cancer. Your Tg after treatment should be near undetactable.

    The first RAI treatment that you had was probably mostly absorbed by your remaining thyroid lobe. Unfortunately with RAI dosage amount, we are on the assembly line of thyroid cancer treatment. Since you have had your total thryoid removed, the RAI should treat left over thyroid tissue or throid cancer (hopefully!).

    My recurrent thyroid cancer was detected less than 4 years post TT and RAI treatment. My stimulated Tg was always less than one. But then my Tg shot up to 6 while on thyroid meds.....A clear indicator of recurrent thyroid cancer. Everyone seems to think that papillary thyroid cancer is 98% curable. Unfortunately that's why are sometimes put on the "text book" approach.

    Wishing you well and hope your upcoming tests and treatment goes well too!!!
  • mommy mae ann
    mommy mae ann Member Posts: 3
    #4
    MLG said:

    RAI amounts you get
    A nuclear med nurse told me that if the cancer is just in the thyroid you get a dose of 100...if it is in thyroid and lymph nodes 150...if it has spread beyond that you get 200.

    I had TT and lymph node removal and mine was 150.

    I don't know if this is standard are just around Illinois.

    My body scan after my TT in August 2008 was clear and my thyroglobulin has been nondetectable at 0.2 the whole time.
    A year and a half later my thyroglobulin is a 14 which is an indication that it is back.
    Waiting to hear what to do next.

    From reading other posts it seems that it comes back a lot more than what I thought.
    I thought I would be going a long time w/out it ever reoccurring but it doesn't look that way.

    Thanks...
    Hi there,
    Thanks for your reply! I certainly appreciate it. I was able to read it just today, thus, the delay of my reply.
    I pray that all will be well as well with you soon...

    take care,
    Mae Ann
  • mommy mae ann
    mommy mae ann Member Posts: 3
    #5
    butterfly123 said:

    RAI dosage
    Hi Mae Ann-

    After TT, the docs typically will do RAI treatment if there is any detecable TG level in your blood. Especially with having TC in both lobes and lymph nodes it is probably a good idea to have the RAI treatment. The endos will then monitor your TG level and use it as marker for recurrent thryoid cancer. Your Tg after treatment should be near undetactable.

    The first RAI treatment that you had was probably mostly absorbed by your remaining thyroid lobe. Unfortunately with RAI dosage amount, we are on the assembly line of thyroid cancer treatment. Since you have had your total thryoid removed, the RAI should treat left over thyroid tissue or throid cancer (hopefully!).

    My recurrent thyroid cancer was detected less than 4 years post TT and RAI treatment. My stimulated Tg was always less than one. But then my Tg shot up to 6 while on thyroid meds.....A clear indicator of recurrent thyroid cancer. Everyone seems to think that papillary thyroid cancer is 98% curable. Unfortunately that's why are sometimes put on the "text book" approach.

    Wishing you well and hope your upcoming tests and treatment goes well too!!!

    Thanks...
    Hi,
    Thanks, too, for taking time to reply. I guess you're right in saying that doctors seem to think that papillary thyroid cancer is pretty much curable, thus, the seemingly "textbook" approach. But based on the other posts here, it recurs at different paces. Doctors should realize that each case indeed must be treated different from the other.
    I hope and pray that you too will be completely well soon.

    Mommy Mae Ann

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