Reoccurance options...someone help me understand

MLG
MLG Member Posts: 52
edited March 2014 in Thyroid Cancer #1
I've posted recently about me having papillary cancer and had a total thyroidectomy w/lymph node remove (6 out of 8 were cancer) 2 years ago.
Had RAI after that.
My Tg levels have always been nondetectable.

Had a sonogram done and it showed a small mass (7mm) that the sono dr very well thinks it is thyroid tissue. (I've never had any after my ablation 2 years ago.)

Had thyrogen shots and body scan recently. Body scan showed up negative, but my Tg bloodwork (after taking the thyrogen shots) was a 5.5

My endo dr said they like to see it below a 2 and with someone of my age, 42, and that I had it spread to my lymph nodes two years ago, they definately don't want it to be a 5.5

He said that there is a huge, huge chance that since my body scan showed up negative, which he said meant that the tissue in my neck didn't "take up" the radioactive iodine for the scan, then I could very possibly go thru the time of no thyroid meds...do radiation ablation and that the tissue still wouldn't "take up" that high dose. Then I would be back to square one again.

He said if it were him, he would do a biopsy of that tissue in my neck, to be 100% sure. Then if that came back positive (meaning that is what was causing my Tg to be elevated after thyrogen shots) then I would have to have it surgically removed.

Does that sound correct, that if the tissue doesn't "take up" the low radioactive dose for the scan then there would be a good chance it wouldn't "take up" the ablation dose?

And about the size...7mm. I'm sure the endo dr would have to consult w/the surgeon who performed my thyroidectomy, but is that even big enough that the dr would even be able to remove completely or would there be a possibility that the surgeon would think it is too small to remove?
Would they then recommend RAI after that surgery, or there again, since it didn't take it up this time, then I wouldn't have it after this surgery like I did the first?

I was totally expecting the route of going off meds then another ablation...not this suggestion.

Comments

  • butterfly123
    butterfly123 Member Posts: 52
    #2
    RAI avid or not
    Hi-
    I read somewhere (and i will send you the info right after I figure out where I read it) that sometimes these small lymph nodes do not show up on the WBS eventhough they are positive for thyroid cancer. So i would not necessarily think that they are non-RAI avid. It has something to do with (fast) function of lymph nodes...and they could possibly show up on a 24-48 hour WBS but not the WBS a week later. BTW, I have had thyroid cancer NOT show up on the low dose of RAI but then show up on the treatment dose...but my thyroid cancer is not in my lymph nodes.

    I would get the biopsy done if I where you. Then have lymph nodes removed surgically followed by RAI especially if you already has reoccurance.

    Tg via thyrogen is approx one-third of what it is hypo. So your hypo Tg is probably around 15.

    I have recurrent cancer and my tg continues to rise. My cancer cannot be removed surgically because of the locations.
    Best of luck and health to you. Let us know what you decide to do.
  • MLG
    MLG Member Posts: 52
    #3
    butterfly123 said:

    RAI avid or not
    Hi-
    I read somewhere (and i will send you the info right after I figure out where I read it) that sometimes these small lymph nodes do not show up on the WBS eventhough they are positive for thyroid cancer. So i would not necessarily think that they are non-RAI avid. It has something to do with (fast) function of lymph nodes...and they could possibly show up on a 24-48 hour WBS but not the WBS a week later. BTW, I have had thyroid cancer NOT show up on the low dose of RAI but then show up on the treatment dose...but my thyroid cancer is not in my lymph nodes.

    I would get the biopsy done if I where you. Then have lymph nodes removed surgically followed by RAI especially if you already has reoccurance.

    Tg via thyrogen is approx one-third of what it is hypo. So your hypo Tg is probably around 15.

    I have recurrent cancer and my tg continues to rise. My cancer cannot be removed surgically because of the locations.
    Best of luck and health to you. Let us know what you decide to do.

    s

    s
  • positive_always
    positive_always Member Posts: 1
    #4
    MLG said:

    s

    s

    bilateral neck lymph nodes
    Hello. I have been reading all the comments and suddenly realized how left out I've been until now. For years I was complaining to my docs that I am always tired. But it was always attributed for me being night shift or new baby or stress. finally my TSH levels started dropping and my physician ordered for an ultrasound. Showed 2 nodules with calcification, an iodine reuptake was done but showed nothing. Fine needle biopsy showed inconclusive. All my physicians were saying that these nodules are very often. 9/09 partial thyroidectomy was done and showed papillary ca with follicular variant. total thyroidectomy was done 2 weeks after and I131 dec 09. TSH levels were always high until sept 2010 down to 0.437. Thyroglobulin was always <0.5 and antithyroglobulin was <20. Never had a repeat ultrasound until last tues which showed small lymph nodes on both sides of the neck. recently I started hurting on my throat and last night started feeling a lump in my throat that never did nt go away even after drinking lots of water. Exactly the same feeling I had weeks prior to my surgery. had not seen the report of the ultrasound but my doc wants to wait for 6 months and repeat the ultrasound. I wanted a pet scan but she says that it might not lit up and suggested Fine needle biopsy and left it for me to decide. I am confused and scared. Got 2 small kids and the bread winner. Last March, also had some weight loss gastroenterologist decided EGD and colonoscopy and found polyps one of which was adenoma. I keep telling people that I try to stay on top of my health because of my kids but other people make me feel that I am overdoing it... is it just my nerves or is there something I should really be concerned of.

    Should I wait 6 months and do the ultrasound or do the needle biosy. Deep inside I feel that both choices are not correct and that there is something else that can be done to check these lymph nodes.

    Hope somebody can help me out.
  • Finnegan1
    Finnegan1 Member Posts: 21
    #5
    positive_always said:

    bilateral neck lymph nodes
    Hello. I have been reading all the comments and suddenly realized how left out I've been until now. For years I was complaining to my docs that I am always tired. But it was always attributed for me being night shift or new baby or stress. finally my TSH levels started dropping and my physician ordered for an ultrasound. Showed 2 nodules with calcification, an iodine reuptake was done but showed nothing. Fine needle biopsy showed inconclusive. All my physicians were saying that these nodules are very often. 9/09 partial thyroidectomy was done and showed papillary ca with follicular variant. total thyroidectomy was done 2 weeks after and I131 dec 09. TSH levels were always high until sept 2010 down to 0.437. Thyroglobulin was always <0.5 and antithyroglobulin was <20. Never had a repeat ultrasound until last tues which showed small lymph nodes on both sides of the neck. recently I started hurting on my throat and last night started feeling a lump in my throat that never did nt go away even after drinking lots of water. Exactly the same feeling I had weeks prior to my surgery. had not seen the report of the ultrasound but my doc wants to wait for 6 months and repeat the ultrasound. I wanted a pet scan but she says that it might not lit up and suggested Fine needle biopsy and left it for me to decide. I am confused and scared. Got 2 small kids and the bread winner. Last March, also had some weight loss gastroenterologist decided EGD and colonoscopy and found polyps one of which was adenoma. I keep telling people that I try to stay on top of my health because of my kids but other people make me feel that I am overdoing it... is it just my nerves or is there something I should really be concerned of.

    Should I wait 6 months and do the ultrasound or do the needle biosy. Deep inside I feel that both choices are not correct and that there is something else that can be done to check these lymph nodes.

    Hope somebody can help me out.</p>

    always
    Definitely get 2nd, even 3rd opinions if you can cover that. This is your health, and with children especially, Nothing should make you put that on the back burner. Are you just tired, or is it due to thyroid malfunctioning? Get another opinion about what you should do. I went to a teaching hospital. The did an FNA (fine needle aspiration) in 4 different places around my thyroid. 2 showed nothing, 2 showed papillary cancer.
    I know this is late, but am in isolation recovering from the radioactive iodine. Have been feeling very low until today, so I really hope this helps.
    Please don't hesitate to ask for a 2nd opinion from a specialist. or even a 3rd. You will quicker get to solutions this way. Prayers and good luck to you.
    Finn

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