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Cancer: Thyroid Message Board
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Old 09-16-2012, 09:45 PM   #1
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tazbeau HB User
Unhappy Diagnosed and quite worried

Hi all,
I hope that as time progresses I will be able to be more supportive of others on this board, but my life has simply turned upside down in the last month and I don't have the experience yet to offer much. I am absolutely overwhelmed right now and have read so much and just don't know what to think. I have a medical background so understand most of what I read, but I am not sure how to weigh it against reality, and ultimately I know my reality will be as unique as each of us are here. I am hoping to find out from others what I should really expect to happen in the next few months and years. I am 60 which doesn't favor the staging or my prognosis. Overall, I would rather be prepared for what is going to happen with regard to the tests and preps for the tests. Reece wrote and said that I would be able to look at all this as a blip in the road.. and I hope that is true. It seems that the road is VERY bumpy right now. Too many issues to deal with.

Surgically, the report was FVPTC with vascular and capsular invasion. The post-surgical histopath report is not out yet. They took the central lymph nodes, but on ultrasound the lateral were clean and not taken. Grossly the central lymph nodes showed inflammation. The thyroidectomy was done 9/14 and I started Cytomel 50 mcg/day and came home 9/15. I found the tumor 8/09. Immediately prior to this I was diagnosed with SEVERE dry eye (reading is very hard for me except in short bursts ), a second spinal s1 nerve impingement re-emerged after surgery 12/23/11. I had to suspend spinal treatment for the cancer tests and surgery. I know I will have RAI and body scans for metastasis. I have Sjogrens (not diagnosed) but Hash, Lupus, RA, Raynaud's, dry eye, have been diagnosed, and my RBC and WBC's are heading south and are below normal, so I think Sjogrens is certain. I need to see someone for it but my first appt is Nov. 2. I need someone to beware of this disease.. or at least I think I do, as so far no one seems to know much about it and its overall effects or interactions with what is going on. Any opinions?

Sweetandsassy stated that she would have to go without hormones for 2 moths prior to RAI. Is that the average? and how bad is that? Do they usually do a body scan prior to RAI? I want to move aggressively ahead as fast as possible. Any thoughts on that? I can't dictate the speed of events due to getting appointments and scheduling is not within my control. All I can do is accept what is available and push as much as I can.
Godspeed, what did you have to do for the PET scan, and how long did it take?

 
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Old 09-19-2012, 12:16 PM   #2
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Re: Diagnosed and quite worried

First, you can wait to have any tests and RAI treatment until after you take care of your other issues if you choose to. More importantly, there is no reason to go off meds at all. There is a medication called thyrogen, Tell your endocrinologist (the manager of your thyroid cancer) you want to go on synthroid, and go on thyrogen when you have your RAI scan (you only need pet down the road if there's a problem with recurrence and RAI doesn't catch it).

I had capsular and vascular invasion, and it was "cured" with my RAI treatment dose. It should take care of everything, don't get too worried, I know a woman who had thyroid cancer 2 years ago in her 60"s and she's just fine. You need a doctor that will work with you and explain things better.

 
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