recurrent thyroid cancer?

[Hokiehoo]

I am a healthy 49 year old petite woman who had a "subtotal" thyroidectomy for papillary cancer (w/ lymph node involvement) in 1992 followed a month later by RAI treatment (100 millicuries).  I began having rising thyroglobin levels in the late 1990s but always negative WBS every 2-3 years.  In 2004 my Tg level rose to nearly 10 on Synthroid and 53 off (norm value 2-35) and in spite of another negative WBS I was given a repeat RAI treatment (150 millicuries).  My Tg level then dropped back to 1 on Synthroid but has been climbing again over past yr & a half to 4 on Synthroid and 24 off. My internist wanted to do another WBS in November but I asked to wait until after the holidays so he ordered a neck ultrasound instead.  It surprisingly showed a 2.68 cm "heterogeneous oblong soft tissue mass" w/ blood flow in my left neck.  In January I had a repeat US which confirmed the first report, followed by another WBS then a PET/CT scan which were both negative.  Because of the Tg level and US reports, my internist referred me to a surgical oncologist at UVA who first echoed the need to remove the mass, but ordered another neck CT which he said showed "nothing worth going in after".  The surgeon decided just to monitor my Tg level another 3 months. My internist feels strongly this mass does need to be removed and now suggested referring me to either Duke or Johns Hopkins for yet another evaluation.  The question is, given the negative WBS, PET and CT scans, do the elevated Tg levels and US findings really suggest a recurrence of cancer?  Or is this simply a regrowth of normal thyroid tissue that does not light up on scans?  

[INmom]

Can you tell me more about your sister who had metastasis to her breast.  I just days ago found out that I now have papillary thyroid cancer in my breast and no doctor that I have interacted with has ever seen this.

[utahmomma]

The elevated Tg levels are an indicator of recurrent thyroid cancer - regardless of what the WBS shows (it may not absorb iodine as well as the original cancer) and it may be too small or not well differentiated enough for the PET/CT scan.  You had lymph node involvement before and you had RAI - your remaining thyroid tissue should be dead.

Also, because you had RAI you are at increased risk for cancer and this time it may not be simple papillary carcinoma.

I think your internist is on the right road looking for another surgeon.   Better safe than sorry and you don't want any recurrence to metastasize.

For what it's worth - I had the remaining half of my thyroid removed after my first surgery showed papillary carcinoma (and the rest of my family also had papillary carcinoma).   I had a recurrence three years later. My Tg rose slightly (3x higher in six months) and my TSH continued to climb.   I had 100mCi and, yes, it was a cancer recurrence.   My sister has had to undergo RAI three times because of metastases and recurrences.

Don't mess with it - my sister's metastasized to her breast and abdomen.

Just my $.02 worth

Utah
papillary carcinoma '03   RAI '06
three sisters with papillary carcinoma, one with precancerous thyroid, and a daughter with precancerous thyroid