need to unload about my thyca

[onemoretime]

Hi all -
Just need a safe place to unload all that's been going on with my cancer.  Here's my history - hope you can follow along.

Dx papillary: Nov. 2007
TT with modified left neck dissection: Jan. 08 (Lymph node involvement)
RAI (200 mCi): Feb. 08
Recurrence suspected after unrelated MRI: Sept. 08
FNA positive for papillary: Oct. 08
PET/CT shows no evidence of recurrence spoted in Sept. 08, but does show new, suspicious lymph node: March 09
Thyroglobulin .48 (rising from a post-sugery low of .17): April 09
Exploratory surgery to remove lymph node and scar tissues around area from Oct. 08 FNA: April 09
Pathology report - no papillary, no suspicious cells in either scar tissue or lymph node: April 09

So basically, the consensus amongst my care team (IU Cancer, Indianapolis) is that I have cancer, they just can't find it.  Even though the PET/CT before the second surgery showed no cancer in the area where it was spotted in the MRI in September of '08 (but had FNA positive for papillary), I went ahead with this second surgery.  I wanted to take out the suspicious lymph node because I had much node involvement at the first surgery, and I was hoping that when they took out the mass of scar tissue from the previous surgery, they might find the growth that they biopsied in Oct. '08.  But no cancer, acording to the path. report.  The only time I wanted to hear, "We found cancer."

We know something's going on because of the thyroglobulin levels.  I just had a blood draw yesterday, so will get my new thyroglobulin numbers next week.  But for now, the plan is to do another draw in 3 months, and go from there.  So we're waiting for my cancer to get big enough to treat.  

I know many have had recurrences, I just wanted a remission.  I've been doing the cancer dance now for 17 months straight.  For now, my plan is to take a cancer moratorium.  I'm not going to do any treatment for the rest of the year, other than take my Synthroid, and get my blood draws.  I figure, if the cancer is so small they can't find it (since this is the "slow-growing", "best kind of cancer to have"), taking 7 months off should be ok.  I'm a BIG advocate for my health, and very involved with my care plan.  So after taking the vacation I've been postponing for almost 2 years - wating for the ever-elusive clean scan - I'm hitting the ground hard in 2010.  I'll find a new program, a new hospital, whatever it takes.  

Sorry to go on for so long, I've just been carrying this around for a month, and I finally needed to let it all out.

-S

ps  Always open to suggestions about great thyca treatment centers :)

[PositiveJB]

Hang in there and enjoy your vacation!!!!

Inconclusive FNA (hurthle cells detected):Aug/Sept 2007
Dx and TT: Oct 2007 (papillary) no I-131 because cancer < 1cm
Clean ultrasound (no abnormalities in thyroid bed): Jan 2008
Declining thyroglobulin levels: Jan 2008
Questionable bloodwork results (TSH): May 2009
Questionable ultrasound (transvascular tumor in thyroid bed): July 2009
Waiting for additional bloodwork and consult from endo

Since I have the history of cancer and previous detection/suspicion of hurthle cells, I will opt to have the new mass removed.  Do the doctors typically want to biopsy first or will they lean towards removal?

[LADYBUG1979]

Hi, I'm new here.  I have a single solid nodule.  Had the FNA.  Came back suspicious.  Now I have my uptake and scan next week.  I just wanted to say hang in there and take that vacation.  You need it.  Go somewhere warm.  Enjoy yourself.  Then come back ready with a new plan.  Blessings.