Just when things are looking up . . . wham!

[utahmomma]

So, "clean" scan on Friday is what the radiologist told me.  There was some uptake in the salivary glands, a bit in the thyroid bed, some in the liver . . . all which he attributed to the radiation being removed from my system.  Okay, I can buy that.  So Friday and Saturday I was doing the whoopie dance.

This afternoon I finally got my thyroglobulin results back.  Two weeks ago it was at .2 - today it is at 1.4!!!!  That's a 700% climb in two weeks!  So, in between appointments (yeah, I work 7 days a week) I looked up some research studies on increased Tg despite a negative I-131 scan.  Not so great news.  Sloan-Kettering and others had some great research which showed that either I need a complete hypohell/LID scan/treatment or a PET scan followed by RAI treatment.  Either I have a recurrence that is iodine resistant or, because I wasn't on a LID, isn't as sensitive to the I-131 as it should be.

Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr.

I hate cancer.  Even the "good" cancer.  Grrrrrrrrrrrrrrrrrrr

Going to have a long chat with the endo tomorrow when he calls with my results (which I already have).

Hope everyone else is having a better night.

Utah

[utahmomma]

Oh, and Friday (Nov 7th) is my 5-year cancer diagnosis anniversary.  Double wahoo.

[blksapphire]

O Utah,

I am hoping that there is some good news in this somewhere.  I read what you wrote, but as you know, I don't understand it all.  I do wish you the best.  What I do know is that I wouldn't want to be the endo.

I will think good thoughts for you.

Take care
Terri

[utahmomma]

I can't yell at him too much 'cause he's getting his thyroid removed on the 13th for thyroid cancer too.  I just know that my family "doesn't play by the rules" with papillary carcinoma.  Somehow we have a hereditary, aggressive form of the stuff that they can't identify.  It just makes me a little extra worried about the liver pain and non-stop headaches I get.   Grrrr, I was hoping I was through with the radiation.

Oh well, that which doesn't kill us just gives us huge co payments!  :-)

[amela321]

Stupid Tg.  I definitely can sympathize.  Your co-payment comment kind of made me giggle, though.  With all the out of pocket I've had to pay for my cancer treatment this year, I met my out of pocket total for the year within 2 months.  So now I don't have to pay a dime for anything medical until next August.  I'm going to get every test known to man whether I need it or not, lol.

Anyway, hang in there.  I guess that's all we can do!

[bet643]

What in the world is going on? Gosh, I sure wish that I could do something for you. I do know about the hereditary thing, but the doctor never says anything about it. I'm over due for a whole body scan and I am not looking foward to it. I just hope that it all works out for you. I will keep you in my prayers .We are a tough bunch here, and we will not let this cancer beat us down! I hate it too. Take care of yourself and keep me posted my dear friend. You are always on my mind.

[DLA]

It just never ends for you, does it?  Am so sorry.  You'd think they could come up with a better solution for you.  Like some kind of direct radiation to eradicate what's left in there.  Am praying for the best outcome possible.  They they don't know cr@p about what they're talking about!  Wouldn't be much of a stretch, most of them don't.  LOL

HUGS!!
Dac

[LoriD1966]

God bless you! You have such a great attitude! I feel bad for complaining!
Take care, Laura

[utahmomma]

Hey - don't anyone ever feel bad for complaining.  That's what this site is for 'cause no one else will listen to us!  :-)

I actually had a shirt made that says "that which doesn't kill us gives us huge co payments"  I also had one made that says "like cr@p, thanks for asking".  I wear them to my doctor appointments and I wore the "thanks for asking" one to my scan on Friday.  It's my poke in the eye back at the medical establishment.

Yeah, I maxed out my out-of-pocket expenses months ago too so if I need a PET scan, RAI (again), or whatever I need to get it done before the end of December.  

Argh, I'm going to take a long, hot bath and do some laundry.  Wahoo.

Thanks everyone!

[bet643]

Love the shirt idea! That's ot a bad idea. I know about those co pays and out of pocket. I had to pay close to 4,000 bucks before they covered the 80 %. Had to rush everything in by december, just so I could start all over again in January. Does this ever end? Come January I have to get another whole body scan RAI so I'll be screwed because of the new deductable,and co pays. Plus all of my labs are due, and have to see 4 doctors.. Long hot bath sounds great. Take care. good luck.

[shellsa]

michelle here at least u a bit better than u was im glad u getting there i complaining cause my sons gone backwards oo dear he doesnt want to stand back to square 1 with me and gapers i wish i knew what was going on this is killing me seeing him like that why me he go backwards im having oppointments out of my ears also for sam never home this is never ending oo dear

[shellsa]

if rai no longer works u mightv have to do the ugly chemo my nanas friend has that rare thyroid one the only one u can treat with chemo must be grade 3

[stella5349]

Up and down like a rollar coaster my little buddy?? hey??

Sorry about the news.

[ChitChatNine]

Utah ...................you in the mood on your 5th anniv to rock the pub?  Let us know ASAP after you talk with your endo ............. this stinks :(

C~

[ChitChatNine]

I mean rock the pub as in tear it apart and destroy it as you must be so so angry right now at all this crud .

C~

[shannon828]

Oh man.  I am so sorry.  I can't wait until they find what is elevating that Tg of yours and zap it into eternity.  BUT, Thyrogen raises your TSH and your Tg, so I don't think you can use those results yet.  My Endo says that when your Tg rises with your TSH it can be an indication of the other antibodies (not TGab) that can artificially elevate your Tg.  Just sayin'...PLUS, my girlfriend who has two big re-growths (she had TT and two rounds of RAI and is going in for second surgery in a week) on her vocal nerve's Tg is .02, so I'm not entirely sure it's the MOST reliable marker in ALL cases.

[Thypatient]

♥ Hope you feel surrounded by the Love we all have for you ♥

[utahmomma]

I'm pushing for a PET scan.  I'm anything but "typical" when it comes to papillary carcinoma so I'm asking my endo to toss out all the text books.  My sister's last recurrence showed metastases into her breasts and liver and her Tg was only .4.  My last recurrence, my Tg only climbed to .5.  Whatever the form of papillary carcinoma we seem to share as a family it seems to be aggressive and not play by the rules the medical establishment has created for papillary carcinoma.

I know the Tg is more sensitive than the RAI but I also know that neither are perfect.  That's why I'm pushing for the PET scan.  After reading a bunch of research from some well-known oncology schools they use all three tests to check for recurrence.

Never ending fun.

Thanks all for the wonderful posts, notes, and PMs.  you all rock!

Utah

[ChitChatNine]

I second you.  I just did a shout out not seeing this post.. Been thinkin of you,

C~

[MJ13]

Hey, girl!    Just wanted to let you know that I'm thinking of you.  Refresh my memory...do you have Tg Ab's?  I have them and was told the only way to tell for sure there is a thyca reoccurance in my situation is a WBS.  With your family history I would press for the PET scan.  

Sending you tons and tons of hugs,
MJ

[quiltedhills]

I don't know you like a lot of these other people do- but best wishes to you!

[Thypatient]

From what I understand I agree with your thinking - go for everything..

[utahmomma]

Thanks guys - MJ, my TgAB has always been "3" so it's not interfering with the Tg.  From what I've read the Tg is more sensitive than the WBS (for those who don't have to worry about antibodies) and the PET scan can be more sensitive than the WBS too.  Down side of the PET though is it can't differentiate exactly *what* type of cancer - just that it is cancer (which I'd like to know anyway since I have a huge family history of various types).

Yeah, if an ouija board, seance, or witch doctor could help; I'm about ready to go for it.  :-)

[ChitChatNine]

I'd do the Pet .... they say high risk . . . you say you want the best possible tests for this and/or any other type of cancer.  Just cause they think it's the "good kind" .. well, don't get me started on that ...... C~

[pep88]

Do whatever it takes to get well.  Bless you.