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butterfly501's Message Board Messages

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if ths is yet another ploy to get me removed.....

rTSH is not a thing

thyrodean is not an actual word in the english language

LOL!!!!!!!!!!!!!!

rTSH!  OMG ...

thyrodean ......

neither exist!

Please; make sure you get your rTSH to measure your thyrodean cells.

Yes.   And the efficacy of ethanol eblation on cancerous thyroid tumors should be studied as well, so no one ever has to lose a thyroid again.

thyroid cancer utopia.

RE: going off-board

by butterfly501 - Wednesday at 7:57 AM

On Jul 17, 2019 7:02 AM student2patient wrote:

I'm sorry you feel the need to spin your wheels on an unknown future, and I understand why you want to do it. 

I pretty sure you do not. I do not consider it "spinning my wheels" because I learned so much about this disease, with 27 days left on the clock for the first appointment. Some people deal with bad news by getting information, which is what I was doing, working things out, and is so much easier in the Internet age.

The cold hard statistics say I have it but must wait to be officially diagnosed. I was in this situation nearly 25 years ago but with no one to "talk" to, helplessly awaiting impending doom. 

I read what goes on in a first appointment so, yeah, no diagosis then either, but likely an H & P and referral for the biopsy. Since this seems to bother you, I am going off-board.

Sorry you're choosing to leave. 

You're not posting anything here that we don't already know from long term experience, and I'm sorry you do not realize this. 

I'm sorry you choose to put the cart waaay ahead of the horse, when you don't even have a thyroid cancer diagnosis.

Good luck to you on your path.  Wishing you a benign Dx, and if not; a good prognosis. 

Aloha!

On Jul 16, 2019 12:23 PM ToddlerFather wrote:

On Jul 16, 2019 4:52 AM butterfly501 wrote:

On Jul 16, 2019 4:37 AM ToddlerFather wrote:

On Jul 15, 2019 11:30 PM butterfly501 wrote:

On Jul 15, 2019 12:18 PM ToddlerFather wrote:

Note that size and location are only the preponderant factors. One other factor is whether your specific mutation is iodine-avid or not; those with non-iodine-avid (like me) have a not as good prognosis. 

So one thing that is not currently on any guideline I read, but in retrospect I would like to have done myself, would be a comparative imaging analysis with WBS versus TC, PET/CT or US, trying to assess beforehand whether the tumor is or is not iodine-avid. 

What's a TC? 

And I'm pretty certain the only way to know if cells are avid for iodine is to dose them with RAI and use nuclear medicine imaging.

Sorry, CT, not TC. 

And the challenge is to find the missing pieces not responding to RAI... so you need one exam where there are clearly structures that should have response to RAI, but there isn't. 

FDG-PET with detectable thyroglobulin and negative RAI imaging.

After a full thyroid removal, yes. But in his or her case, the thyroid is still there, both tumorous and non-tumorous parts. 

That doesn't exist.

I can lend you my magic 8 ball, if you want to ask it.  LOL  :D :D :D

Even if you do have thyroid cancer, it's usually very survivable, curable, and thriveable. 

I've been on this site for close to 10 years and tons of people come here; worry, worry, worry, and then we never read another peep from them again.

Is it possible you do not have thyroid cancer: Yes.

Is it possible you do:  Yes.

You will not begin to know something until the FNA results. 

I'm sorry you feel the need to spin your wheels on an unknown future, and I understand why you want to do it. 

Having been in the position of being told most likely my thyroid nodule was nothing, then being told on my birthday while 7.5 months pregnant after contracting food poisoning from my b-day dinner night out with my husband....(the only time I barfed during my entire pregnancy), that I had cancer, while pregnant with my first (and only) child:  I can tell you first hand, you can't statistic this stuff.  You can not.

Allow yourself to relax for a moment, and just be.  No one has any idea if it will be or not be thyroid cancer.  But, at the very least, know that is rarely is a death sentence, is most likely quite survivable, and usually has a good prognosis. 

Be well, and give yourself a break from the worry.

On Jul 16, 2019 4:37 AM ToddlerFather wrote:

On Jul 15, 2019 11:30 PM butterfly501 wrote:

On Jul 15, 2019 12:18 PM ToddlerFather wrote:

Note that size and location are only the preponderant factors. One other factor is whether your specific mutation is iodine-avid or not; those with non-iodine-avid (like me) have a not as good prognosis. 

So one thing that is not currently on any guideline I read, but in retrospect I would like to have done myself, would be a comparative imaging analysis with WBS versus TC, PET/CT or US, trying to assess beforehand whether the tumor is or is not iodine-avid. 

What's a TC? 

And I'm pretty certain the only way to know if cells are avid for iodine is to dose them with RAI and use nuclear medicine imaging.

Sorry, CT, not TC. 

And the challenge is to find the missing pieces not responding to RAI... so you need one exam where there are clearly structures that should have response to RAI, but there isn't. 

FDG-PET with detectable thyroglobulin and negative RAI imaging.

On Jul 15, 2019 12:18 PM ToddlerFather wrote:

Note that size and location are only the preponderant factors. One other factor is whether your specific mutation is iodine-avid or not; those with non-iodine-avid (like me) have a not as good prognosis. 

So one thing that is not currently on any guideline I read, but in retrospect I would like to have done myself, would be a comparative imaging analysis with WBS versus TC, PET/CT or US, trying to assess beforehand whether the tumor is or is not iodine-avid. 

What's a TC? 

And I'm pretty certain the only way to know if cells are avid for iodine is to dose them with RAI and use nuclear medicine imaging.

Those without thyroid and on TSH suppression (like me, and the majority) also need blood a few times a year to monitor levels.  But TSH stabilizes once the correct dose is found.  That can take some years but it's totally doable.  Your body needs time to stop looking for the thyroid and depend on the oral dose.

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About butterfly501

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Thyroid Cancer

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