FVPTC-RAI or not? Would love to hear your story!

momtoboys
momtoboys Member Posts: 11
edited March 2014 in Thyroid Cancer #1
I had the right side of my thyroid removed on Nov. 17, 2010 and the left side removed on Nov. 30, 2010. The pathology report showed a 2cm encapsulated nodule on the right side - follicular variant of papillary thyroid carcinoma. THe surgeon also removed two neighboring swollen lymph nodes....these did not test positive for cancer. It was also revealed that I had Hashimoto's.

I saw my endocrinologist on Jan. 4th. He does not recommend RAI, but after my litany of questions and concerns, he did say he would give it to me if I wanted it. I am waiting on the results of the thyroglobulin test. If I DON'T do it, then it is my understanding that the thyroglobulin test is not an accurate cancer marker for us, right?

I have read alot of your stories on this forum and I know that this variant recurs frequently and behaves in a somewhat more aggressive fashion. I would love to hear your stories and feedback and any advice you can send my way. Thank you in advance :-)

Marlo

Comments

  • sunnyaz
    sunnyaz Member Posts: 582
    #2
    RAI or Not
    Hi Marlo,

    You can read my story by clicking on my name. I had Papillary cancer with a smallish node that was encapsulated. Endo decided not to do RAI. I thought I was out of the woods after my TT. Not the case. I had metastasis to the right side to the Lymph nodes and now three surgeries later I am facing my second RAI. I don't know about the Thyroglobulin test being inaccurate if you don't do RAI. The only other thing to do is keep getting Sonograms to check for suspicious nodes. Then usually a Fine Needle Aspiration to test for cancer. My opinion is that you should go ahead and do the RAI especially because of the Follicular variant. I didn't have the variant but I was B-RAF positive after my second surgery. I wish that I had done the RAI after my TT. RAI kills remaining Thyroid tissue that can not be taken during surgery, thus reducing your chances of recurrence. It can kill microscopic cancer cells, but not tumors. I hope this helps a little. I wish you luck in your decision.

    Julie-SunnyAZ
  • ultramichelle
    ultramichelle Member Posts: 8
    #3
    sunnyaz said:

    RAI or Not
    Hi Marlo,

    You can read my story by clicking on my name. I had Papillary cancer with a smallish node that was encapsulated. Endo decided not to do RAI. I thought I was out of the woods after my TT. Not the case. I had metastasis to the right side to the Lymph nodes and now three surgeries later I am facing my second RAI. I don't know about the Thyroglobulin test being inaccurate if you don't do RAI. The only other thing to do is keep getting Sonograms to check for suspicious nodes. Then usually a Fine Needle Aspiration to test for cancer. My opinion is that you should go ahead and do the RAI especially because of the Follicular variant. I didn't have the variant but I was B-RAF positive after my second surgery. I wish that I had done the RAI after my TT. RAI kills remaining Thyroid tissue that can not be taken during surgery, thus reducing your chances of recurrence. It can kill microscopic cancer cells, but not tumors. I hope this helps a little. I wish you luck in your decision.

    Julie-SunnyAZ

    Did RAI
    Ok I am 7 days out from my RAI, I have to say I am still struggling with the distance I have to maintain from my 2 boys a 1.5 yr old and a 4 yr old. They don't understand and I know that it is best I be safe to keep them safe. If I didn't need it I wouldn't have done it for sure. I had a 1.5cm lession (rt) and a 4mm lesion (lt) and my central lymph nodes contained the papillary cancer I am almost 41. I agree if you don't do the RAI you can't get to the undetectable level accurately. I will be looking for any elevation to indicate if cancer is back, though we may not be able to find the cancer even if level goes up....so is that accurate?? But its all we got.
    I recommend doing whatever makes you feel in control of this and your comfort level since that is invaluable. You are in charge and it sounds like your doctor is on board with your choice. You will do the right thing and I wish you the best.
    Michelle
  • momtoboys
    momtoboys Member Posts: 11
    #4
    sunnyaz said:

    RAI or Not
    Hi Marlo,

    You can read my story by clicking on my name. I had Papillary cancer with a smallish node that was encapsulated. Endo decided not to do RAI. I thought I was out of the woods after my TT. Not the case. I had metastasis to the right side to the Lymph nodes and now three surgeries later I am facing my second RAI. I don't know about the Thyroglobulin test being inaccurate if you don't do RAI. The only other thing to do is keep getting Sonograms to check for suspicious nodes. Then usually a Fine Needle Aspiration to test for cancer. My opinion is that you should go ahead and do the RAI especially because of the Follicular variant. I didn't have the variant but I was B-RAF positive after my second surgery. I wish that I had done the RAI after my TT. RAI kills remaining Thyroid tissue that can not be taken during surgery, thus reducing your chances of recurrence. It can kill microscopic cancer cells, but not tumors. I hope this helps a little. I wish you luck in your decision.

    Julie-SunnyAZ

    thyroglobulin level post TT
    Hi Julie,
    THanks for your feedback. I read your story and it makes me want to make sure I do everything I can on the front end to beat this cancer and be proactive about things.
    I received my thyroglobulin level results....it is currently .2 - what was your level post-surgery? I know you said you had reoccurence 6 months later. Thanks in advance for your thoughts and opinions.
    Marlo
  • sunnyaz
    sunnyaz Member Posts: 582
    #5
    momtoboys said:

    thyroglobulin level post TT
    Hi Julie,
    THanks for your feedback. I read your story and it makes me want to make sure I do everything I can on the front end to beat this cancer and be proactive about things.
    I received my thyroglobulin level results....it is currently .2 - what was your level post-surgery? I know you said you had reoccurence 6 months later. Thanks in advance for your thoughts and opinions.
    Marlo

    Thyroglobulin Level Post Surgery
    Hi Marlo,

    After my third surgery it was undetectable. I am not sure what the max level is or should be but I was glad that it was undetectable. This is of course after the first surgeon messed up the second surgery and the pro had to go in and fix the mess. I am definitely more proactive in my own health care now that I have been through this whole experience. I hope all works out well, keep us posted.

    Blessings,
    Julie-SunnyAZ
  • nasher
    nasher Member Posts: 505 Member
    #6
    Get the RAI
    I don’t think
    Get the RAI

    I don’t think I can say this enough

    From what I have found most the people with early caught Thyroid cancer who have problems/re-occurrences are the ones who decided that RAI was not necessary the first time.

    Sure there are lots of side effects.

    The only real negative I can think of is that once they kill the remaining thyroid they may need to adjust the amount of synthroid you take because your body won’t be producing any of its own.

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