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New to board. TT for 1.5 & 0.3 cm papillary CA, scheduled for 100 mCi RAI, having 2nd thoughts

Bob20000
Posts: 3
Joined: Dec 2010

Hi all;

Like my subject says, I'm post TT for papillary carcinoma, and now scheduled for RAI in 2 days. I think I fall into the borderline area concerning RAI. My surgeon was of that mind, my endo says 1 cm is the current cutoff point. I know parameters for RAI treatment change over time as more studies come in. Some studies say 2 cm is the cutoff point for effective treatment.
My 1.5 cm tumor was well encapsulated, the smaller one was too small to identify the capsule but its margins were clear.
My biggest concern is about long term salivary gland damage. Another concern is another cancer secondary to RAI treatment. Some studies show a statistical increase for sec CA in RAI pts.
http://www.mythyroid.com/radioactiveiodinecancer.html

The dosage I'm scheduled for is 100 mCi.
I don't want to blindly accept what my Dr. tells me. I need to make an informed decision.
Any comments are appreciated.

sunnyaz
Posts: 582
Joined: Oct 2010

Hi Bob,

Just had my third surgery on Friday for recurrent Papillary Thyroid carcinoma. I wish I had been given RAI after my TT in November 2009. MAY not have had the recurrence. You can read my story if you want by clicking on my name at the side of this post. I need to update now that I am home from the hospital (as of yesterday) and recovering. I had 80mCi's in September after my second surgery to remove Lymph node metastasis. I have had no side effects from the RAI. I sucked on Jolly Ranchers and chewed gum to keep my salivary glands productive during my isolation of only four days. I highly recommend the RAI especially with a 1.5 cm tumor. Mine was also encapsulated however after my second surgery I tested positive for the B-RAF mutation gene which makes cancer more aggressive and more difficult to treat. Had I known about it after my TT, I probably would have insisted on the RAI despite what my Endocrinologist said. But he didn't test for it until after my Lymphectomy (right side neck dissection) in June of this year. Some mistakes have been made in my care and I hope that my story will encourage others to take more aggressive actions and treatment in the beginning to avoid what I have been through. I hope this helps.

Julie-SunnyAZ

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