RAI full body scan - need to vent!!

[utahmomma]

Okay, little history:

- Right thyroid lobe removed 2003 - 5mm papillary carcinoma
- 3 of 4 sisters diagnosed with papillary carcinoma in 2004, another with precancer, and my 16 year old daughter with precancer
- Had the left lobe out 2004
- Stable labs and TSH until 2006.  Had RAI of 100mCi with "significant" uptake in the thyroid bed.
- Thyroid storm Feb 2007 - meds decreased to 150mcg Synthroid
- Now having 1-year followup thyroid scan

. . . so I had the full body scan today after they thyrogen shots Monday and Tuesday and 4mCi of RAI on Wednesday.  Went just as usual but from what I could see of the screen (without moving) saw bright spot in my head (and radiation in my bladder, colon, and liver - which is normal).  Anyway, went to the waiting room to get the "all clear" from the radiologist when the tech came out, looking a little shaken, and asked me to come back in for more scans.  Instead of a flat view of the front of my body they ran the scan on the sides this time of my head and neck.  The bright spot had worried them too and they needed to see if it was a lymph node or salivary gland.  It's not.  The "bright spot" is under my left eye, towards my nose.  Apparently in my sinuses.   They have me downing tons of water to flush as much background nuclear material out and see if they can get a better idea of the size of this "thing" in my sinuses.  They have one of the nuke med doctors coming in tomorrow (yes, Saturday) for the scan - not just a technician.  Now THAT isn't normal.

A year ago I had *NO* uptake in my head - it was all in my "thyroid bed".  Now I have a very bright spot in my sinuses which coincides with a sore area (with a bit of bleeding) I've had for about 6 months.  I just struck it up to allergies, working around a lot of dust and dirt, and Flonase (Rx allergy) spray.  

Arrghh!  This stuff *never* metastasises to the head - it goes to the lungs, bone, and lymph systems.  What the?!?!??!?!?

I'm going off food and synthroid now so I can prep for the Chernobyl dose of RAI. Have to talk to the endo next week (after all the labs and scans are finalized) and see what the next course of action is (surgery too?  external beam radiation?  Voodoo??)

So did I just go from a 5mm, Stage I cancer to Stage III or IV?!?!  Unbelievable.

I'm not even going to ask "what next" - I'm tired of being the 1% of the 1% of the 1%!!!!!

Okay, I'll quite complaining.  Thanks for listening,.

[whittie1]

Well, I know you dont know me but I have been lurking for a long time now.  You and your family have been on my mind as my own family is similar with the Thyroid Cancer thing.  I'm keeping you in my prayers.

[utahmomma]

She's actually doing okay.  She has the most beautiful 1 1/2 year old "miracle baby" daughter ever.  So far there doesn't seem to be a recurrence of any cancer.  However she is really having serious bone problems (and I am starting to develop them too) which is probably tied to the high doses of thyroid replacement and the RAI.  She just had her second surgery on her back and she is pretty riddled with arthritis (and she isn't even 30 yet)

Thanks for asking.

[whittie1]

Can I ask how your sister who had it the worst is now?  

[utahmomma]

Thanks for all your support!  You are the best

[utahmomma]

So my endo finally got my thyroglobulin and nuke med results.  First his nurse called this morning (before they got the scans) and told me the doctor said "don't worry, he's never heard of thyroid cancer metastasizing to the head."  The doctor called me later this afternoon with the following:

Thyroglobulin level went to 1.5 on the thyrogen shots which is still within the "acceptable level".  The nuke med scans showed "abnormal amount of thyroid uptake in nasal area and small amount of uptake in thyroid bed"   He said he was very confused as to why I had uptake there and went back and looked at last year's treatment dose (100mCi) results which showed *no* uptake in the head.

He said he's not ready to say it has metastasised to the head but he can't completely rule it out.  :-(  Good news is, "it's small, whatever it is".  Next step is he wants to schedule me for an MRI of the head which confuses me.  Shouldn't it be a CT scan???

Argh.  Maybe if I beat my head against the wall enough I'll just dislodge the thing!  :-)

[mw1943]

God bless you and your family and your doctors. Keep us posted, as we're here for you.

[pjgovitz]

Will be thinking of you and praying for you..

[utahmomma]

Thanks for the kind words everyone.  I went back for the second full body scan today after drinking more water in the past 24 hours than I thought possible.  Much of the radiation had flushed from my system - just traces in my bowels and bladder but the "hot spot" was still visible in my head.  Grrrr.  Guess I'll wait to hear from the endo next week after the radiologist has had time to report on it.

I called my youngest sister (the one who had the most advanced spread) to clarify her treatment and condition (things get skewed when passed through my mom).  Her largest dose of RAI was 225mCi - not 175mCi like my mother though.  Her original cancer was confined to the thyroid and one lymph node but the RAI scan after her surgery showed thyroid tissue in her liver, lung, both breasts, and throughout her lymph system.  Hence why she needed three mega doses of RAI.  She said that her doctors explained to her that while there may be an encapsulated nodule or two of papillary carcinoma in the thyroid there are often micro-cancers throughout the body that will take off.  Sounds like what I may be facing.

Guess I just get to wait and see what the endo says next week.  Meanwhile, since the Nuke Med MD, the radiologist, and two nuke med techs all said they would be seeing me in 6 weeks for another treatment dose of RAI I've already started the diet.  Yum - raw nuts and veggies.  This time I'm NOT going through depression though - I already told my case-manager in Nuke Med that I'm not going off my antidepressants.  He smiled and said that I sound like every other repeat thyroid patient.  :-/

thanks all!

[GravesLady]

You (and your family) have been through so much, you are justified and deserve to vent.

I pray all turns out the best for you.

Thoughts and Prayers.

GL

[malawi]

it sure seems unlikely that such a small pap cancer would spread.Im pretty sure my nuke tech back in jan for my first WBS told me that seeing stuff in the sinuses was normal.Try to stay positive and ill say a prayer for you.By the way are there any current clinical trials for Voodoo treatments?ha ha..keep that sense of humor coming.
Roman

[kipland]

You have every right to complain, and feel free to do so.  I'll bet you're scared out of your mind!  I know I would be.  And I really do understand your comment about the percentages.  I felt the same way.  After my TT, I had some complications where I lost my voice, choked on everything I drank and couldn't breathe well.  This went on for 6 weeks!  Was told that a small percentage (can't remember what the number was) of people have this problem, and with another small percentage, it could be permanent.  I told him not to use the percentages on me, because they're NOT my friend.  My endo did not think my nodule was cancer either.  In fact, she told me that 95% of the time they're benign.  Imagine my (and her) surprise when I got the biopsy results back!

I know that after a cancer diagnosis, findings such as this are scary.  I wish there was something that I could say that would make you feel better, but having gone through it, I know there isn't.  Please keep us posted and let us know your outcome.  Know that we're all thinking of you and hoping for the best.  I'll be praying for you!

Lori

[devushka]

You can complain anytime you want! I hope your next scan goes well. Please keep us posted.