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Radioactive Iodine for Follicular Cancer

jeffheather
Posts: 3
Joined: Oct 2008

I was diagnosed with follicular cancer in October and had two surgeries to remove my thyroid. My surgeon is an ENT who referred me over to the Endocrinologist immediately after my surgery. The surgeon had advised that we would be doing the radioactive iodine treatment followed up with scans peridiocally. Two weeks after surgery when I went to see the Endocrinologist he said he wasn't doing the iodine and he waasn't doing any other scans (I have another spot on my spine we are trying to identify because it can't be biopsied). He even went so far as to tell me that he had just come back from a conference where he was told thyroid cancers have been treated too aggressively in the past and that he would have just left mine in my neck. Supposedly this is THE endocrinologist to go to at this medical center and I am really worried about my treatment.

Has anyone else heard that thyroid cancers are being treated too aggressively? I'm in Dallas and we have some great research hospitals in the state, but nothing I've seen supports what this doctor is telling me. I have a history of skin cancer and colon cancer in my family so I am pretty reluctant to accept this. Has anyone else not had the radioactive iodine?

Thanks,

Heather

gmthul's picture
gmthul
Posts: 19
Joined: Sep 2008

I was enrolled in a research protocol at Mayo in Rochester, MN, where they were trying a "less aggressive" monitoring approach to thyroid cancer. Based on my own research and my young age (29) I wasn't comfortable with the protocol. I switched back to my local medical center, where I received the RAI on their protocol. Since then, I got a 2nd opinion on my tumor from a much better pathologist, and found there was vascular invasion. Needless to say, I am really happy with my decision to go ahead and use the more "aggressive" treatment protocol.

jeffheather
Posts: 3
Joined: Oct 2008

I'm really glad you decided to listen to your instincts. I guess I need to listen to mine. Thank you for the reminder.

mlead1
Posts: 3
Joined: Dec 2008

There are different schools of thought and I, for one, do not believe in playing the odds - even if they are in your favor. I'd like to see a doctor NOT treat himself if HE or SHE has thryoid cancer. Too many doctors focus on the high rate of survival, and they do not take into account that throid cancer can grow and invade structures such as the trachea, the corotid artery and the jugular vein and the recurrent nerve. I went to one of the top thyroid surgeons in the world at Sloan Kettering in NY and he told me to leave a cluster of malignant lymph nodes alone (I had total thyroidectomy in 6/2007 for paillary tc) - no way am I listening to him. I met with 2 other endocrinologists and surgeons at other major head and neck centers in NY and they told me to operate.

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