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Sjögren's Syndrome Message Board
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Old 09-16-2012, 11:03 PM   #1
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Join Date: Aug 2012
Location: MN USA
Posts: 11
tazbeau HB User
Unhappy Sjogren's I'm sure? and cancer I know.

I am brand new here and just posted the following on the Thyroid Cancer board, but feel like maybe some of you can give me some input if you have had like experiences. I am sure I have Sjogrens (see body of letter) but just had surgery for Thyroid cancer. None of the doc's I have seen so far know anything much about Sjogrens, or certainly haven't offered anything with regard to how Sjogrens might play a role with the cancer and ongoing treatment. I know that Hash and thyroid cancer are linked, but at this point it is academic. I do have an upcoming appt with a specialist. (rheumatologist; spec in autoimmune) Do any of you know how cancer and Sjogrens' combine? What I should be wary of.. what should my docs take note of? I think my kidneys are fine, I do have an L3-L4 fusion, current S1 nerve root impingement, but recently the pain has moved up to right under my shoulder blades. They have seen cysts in my kidneys but that is not unusual at my age.
Letter on Thyroid cancer board:
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 ), second spinal s1 nerve impingement re-emerged after surgery 12/23/1. 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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