Recurrent cancer? RAI resistant? What do I do?

[Hokiehoo]

I had a total thyroidectomy for papillary cancer in 1992 (with lymph node involvement) followed by RAI treatment.  I have had rising Tg levels since the late 1990s but had negative WBS's done every 2-3 years.  In 2004 was given a repeat RAI treatment (150 millicuries) due to Tg level of 23 (off Synthroid).  My Tg has been climbing again over past yr & a half to 4 on Synthroid and 24 off.  I had a neck US in November that showed a .7 cm x 2.68 cm "heterogeneous oblong soft tissue mass" w/ blood flow in my left neck. Last US in 2004 was negative. Repeat US last month confirmed the November US, and I have also now had a negative WBS and and "inconclusive" PET/CT scan.  Because of the Tg level and US erport, my internist referred me to UVA. The surgeon there ordered another CT which he said showed "nothing worth going in after" and was just going to monitor my Tg level another 3 months. My internist feels strongly this mass should be removed and suggested referring me to either Duke or Johns Hopkins for another surgical opinion.  He also feels because all the scans have been negative, I have become RAI resistant.  At my request (due to info I've read), he ordered an US guided biopsy which I had yesterday.  During that procedure they did tell me that this mass is thyroid tissue, but they couldn't tell me if it's normal or malignant.  They showed me where it's sort of lined up with the jugular vein and carotid artery in the left side of my neck.  If this turns out to be normal tissue, is this something I should still have removed? My internist says I should but I really don't want to go through surgery unless absolutely necessary.  If it's a recurrence, given the resistance to the RAI, wouldn't I be better off going to Hopkins than Duke?  I would greatly appreciate your objective opinion.  

[Mark Lupo, M.D.]

This is not likely related to the thyroid cancer, but parathyroid disease should be looked into -- check calcium, PTH and Vit D.  If normal, would also test urine/serum protein electrophoresis and talk to the endocrinologist about other possible causes of early bone loss.

[Hokiehoo]

Would you please read my previous post?  I had surgery a week ago on my broken arm and tried to schedule a return appt. with my endo but he can't see me for over a month.  I would like to know if that's really the direction I need to go to evaluate my bone loss.  The ortho surgeon feels that I have lost an abnormal amount of bone for my age and is concerned about the cause.  He said taking calcium is like pouring water through a leaky pipe - that we have to fix the leak first and he feels it could be related to what is going on with my thyroid/Tg level, etc.  Does this make sense to you?

[Hokiehoo]

Can this be related?  I was ready to wait three months to recheck my Tg level, but now I'm not sure.  I fell in my dining room Wednesday evening, instinctively dropped ny right arm to break my fall, and ended up breaking both bones in my right arm - I am scheduled for surgery Tuesday to have pins inserted to stabilize the joint.  When I was telling the orthopedic surgeon my health history, he said I should probably continue exploring whatever is going on with my thyroid/Tg level because I'm too young for my bones to be so brittle.  The bone density showed a 26% loss. Could this be another indication of what is going on?

[Mark Lupo, M.D.]

I am not sure what "nonspecific" means - that is not one of the diagnostic categories that we use.  The comment about 2.7x0.7cm is an odd shape for a cancer -- which tend to be more rounded.  Nonspecific could mean the biopsy was not adequate.  With the elevated Tg, depending on the appearance of the mass, would pursue.  This is usually a slow process, so re-evaluation in a few months is not likely to change the outcome, but it may be worth getting more details on what the FNA really means and have the slides sent out for second opinion (unless it's simply an inadequate FNA - in which case, depending on the US appearance, FNA should be repeated).  Tg and US are more sensitive than PET and CT.

[Hokiehoo]

I got a "nonspecific" path report from my FNA and had convinced myself to wait a few months to monitor my Tg level, but after reviewing the news from another poster Amela123 I have been wondering if my FNA may have just missed the mark.  The mass found on my US is 2.68 cm by .7 cm.  Is it possible the area they tested may not have contained malignant cells?  I would hate to go to a doctor 3 months from now and have him tell me he wished I would have gotten to him sooner. Am I crazy for waiting?

[Hokiehoo]

Poster Amela321 and I both have similar histories - thyroidectomies 23 & 15 yrs ago respectively now with elevated Tg levels and neck masses. Our doctors seem to have completely different attitudes in evaluation/treatment. My doctor wants to pursue (to the point of my exhaustion) & Amela's seems to be more laid back.  What is the best approach?  Are these 2 characteristics alone strong indications of a recurrence given the negative reports from all other tests?  

[amela321]

You're right, it does sound like we're in a similar situation except my doc wouldn't even order a PET scan.  I just got back from the FNA (owww!!) and am anxiously awaiting the results of that.  I hope mine comes back definitive one way or the other.  I'm sorry yours didn't.  I'll be interested to see how Dr. Lupo answers your latest post.  Much good luck to you and I hope it all works out.

[Hokiehoo]

I finally got the report from the FNA.  My doctor said it was "nonspecific".  When I asked if that meant the mass is nothing, he said he's still not sure given my Tg level of 24, and that he wasn't enthusiastic about the biopsy (which was done at my request) because he didn't think it would give us any info.  He again gave me the option of a referral to Duke or Hopkins for further evaluation or to continuing monitoring my Tg level for 3 months to see what happens.  In the past 6 weeks I have had a RAI WBS (and deemed "resistant"), a PET/CT scan and a neck CT, all of which have been negative, and all simply because of the elevated Tg level and mass seen on US.  Is this really something I should continue having evaluated, or could this just be my "normal"?  I'm inclined to wait the 3 months, but don't want to wait if that would mean having to go through this all over again.  

[Mark Lupo, M.D.]

US is better than CT for these types of masses.  PET is not always positive, but the lack of PET positivity suggests the lesion may not be as aggressive.  The 2.7cm mass in the neck is likely a recurrence/persistence of PTC.  Best option would be to remove it (along with removal of lymph nodes from the adjacent areas) if the FNA biopsy proves this.  Would consider going to Hopkins for evaluation.