FNA positive, WBS negative, PET negative recurrent thyroid cancer

[amela321]

Has anyone heard of this happening?  My recurrence was confirmed by biopsy, but isn't showing up on either a WBS or a PET scan.  I wish my body would react like a normal patient.  

[BoilermkrRC]

i'm newto this message board and due to get an FNA tomorrow....so i'm currious what are the symptoms (if any) to recurrent TC? i have to get an FNA on 2 lymph nodes (total thyroidectomy and RAI back in '10) and there is also 1 questionable lymph node. Apparently my thyroglobulin levels were elevated as were my thyroglobulin antibodies.

i had Hashimoto's before i was diagnosed with papillary thyroid cancer... so i'm just trying to get a feel. At this point i'm not feeling optimistic as i have been having some weird symptoms since april (and they bumped up my WBS from june to may and that came back negative)... but i went in for an 18 month check, labs came back with elevated Tg and and elevated antibodies... ironically enough i had a bioscreen down and my white blood cell count was low...

Any thoughts on what this could be? Do you think it's a recurrence?

[dawnangela]

Huh, i never even knew you could grow a thyroid back..

[dawnangela]

FNA...Fine Needle Aspiration:)

[Leeleepbg]

I had a total thyroidectomy 16 years ago.  I had a test afterwards, but no significant radiation treatment.  My TG level has been dancing between .8 and 12 for the past year and a half.  Now they want me to go for tests and perhaps ablation (RAI?) or surgery, depending on the findings of the U/S and WBS.  I also had breast cancer around 4 years ago.  Is anyone just sick of being a friggin patient?  Has anyone read the recent news release on Thyrogen?  11/2009, garbage in the meds.  Advising physicians to look at the powder for foreign objects?  Frankly, I would love to have my thyroid back. I am thrilled at the concept of not having to take synthorid and cytomel every day of the rest of my life.  Do any of you folks know anyone who just let their thyroid grow back and lived happily ever after?  

PS.  What is FNA?  I am sure I have had it but would love to know what it stands for...

[redhed87]

I have heard of scans showing negative when in fact there is recurrence.  I heard with thyrogen that this is a 15-25% possibility.  I haven't done TG levels yet- my next bloodwork.  This will be supressed though.

[ChitChatNine]

how do they treat differently ... whole beam ?  Thanks for updating the acron. page!

Tricia WELCOME to the board ...

Cheryl

[amela321]

Have they definitively diagnosed a recurrence for you yet or are they hunting for it based on an elevated Tg level?

[utahmomma]

If you have already had two rounds of RAI (the second one would have been for a recurrence since the first one would have killed off any healthy thyroid tissue) you very well may have I-131 resistant cancer now.

I wish I had some good answers.  The problem that most of us have is there aren't a lot of good answers to be had from the medical community!  We're pretty much just depending on each other.   Hey, no worries on my end - they say that papillary carcinoma isn't hereditary yet I have it, three of my sisters have it, the other has pre-cancerous thyroid, as does my daughter.   No worries, right?  :-)

Get some rest.  We'll get through this together.

[amela321]

I wish I had the information about the first time.  I've requested the medical records but they have to dig it out of some warehouse because it was so long ago.  I'm ashamed to admit I remember very little except it was bigger than they expected, it was behind the thyroid gland, there was lymph node involvement and it was papillary thyroid cancer.  I had the near total thyroidectomy in Dec. 1985 and two rounds of RAI.  One in Jan. 1986 and the other somewhere around March or April of 1986.  I don't even remember why they did the second RAI, if there was residual healthy thyroid tissue or residual malignancy.  

The FNA said suspicious for papillary thyroid cancer confirmed by second pathologist.  It didn't say anything about the differentiation.  

I'm sorry you've been through and are going through all this as well.  I'm just having a bad night tonight, I guess.  I just want to KNOW for certain what is happening and what will happen.  I can't tell you how much I appreciate your understanding and information.

[utahmomma]

The knowledge only comes from way too much experience (sigh).  Talk to an oncologist.  You obviously have a cancer recurrence but with it not showing on the WBS or PET, it will need to be treated differently.

What kind did you originally have?
Did you have RAI treatment after (and, if so, how many times)?
What did the FNA say, exactly???

Argh; I'm sorry!!  I've only checked this stuff out because, if things keep going the way they seem to be going, I'll be on my second recurrence this year.  My sister has been through three courses of RAI and, if she has another recurrence, she will have to be treated differently too.

Who says this stuff is "the easy kind of cancer?"    Grrrrrr

[amela321]

So to sum up, it may be sort of de-differentiated, but slowly?  That's why it's not showing up on either scan?  Utah, you have so much knowledge about this stuff.  What do you think the next move should be for me?

Thanks!!

[TriciaS]

Thank you very much UtahMomma (aptly named!), and Amela321, good luck to you!

Tricia S. the newbie

[utahmomma]

Okay - I updated the thyroid acronym page to include WBS.   Sorry TriciaS (and every other newbie).

[utahmomma]

Whole body scan (oops, sorry).  That's when you drink the "Koolaid" (medically known as RAI, radioactive iodine, or I-131) then they scan your body to see where the radiation is absorbed.  Where it is absorbed is where any remaining thyroid tissue/cancer may be (at least thyroid tissue/cancer that absorbs iodine).

[TriciaS]

Sorry to butt in, but I'm a newbie and was wondering what a WBS is?

Thanks for helpin'!

Tricia S.

[utahmomma]

Are there "normal" thyroid patients??   (lol)

If it was confirmed by biopsy then - yeah - it's cancer.  If they found cancerous cells, that's a 100% positive test.  

The reason it may not be showing on the WBS is it may not be the type that absorbs iodine.  The reason it's not showing on the PET is because it may be slow growing.

Are you seeing an endo or an oncologist?  You may need a different type of treatment than I-131 if it's not showing on the WBS.