Radioactive iodine or not

Posted by jtidaill @jtidaill, Jul 2 6:51pm

Hi all, I'm feeling lost and overwhelmed. I found out in April I have thyroid cancer. Then in May I had a TT and neck resection. This month I'm supposed to do RAI and have been on the fence about it since they recommended it. I really don't want to. I haven't had a recent scan and don't know what the tumor markers are. If the cancer hasn't spread elsewhere and is contained and minimal, I would rather be monitored and forego RAI. I'm waiting to hear back from my endo and oncologist for further advice. I feel like everything is moving so quickly and I haven't had a moment to process and digest having thyroid cancer. I don't know if I should be getting a second opinion, hold off on RAI, do what's recommended, or what.

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cherylharder2001 | @cherylharder2001 | Jul 3 9:39am

Firstly - thanks for sharing your concerns. The bottom line is that YOU make the final decision. Rely on the Dr's for the factual advice.
I had TT last August and then in April they found cancer in my lymph nodes in my neck, so went is for that surgery. My Dr is NOT recommending RAI, and I can only conclude that I don't need it at this time.
My understanding is that in the past RAI was protocol, and that has changed. RAI is only recommended when necessary. If you believe that you need a second opinion, then do it so that you feel at ease with your decision.

azitaanita1 | @azitaanita1 | Jul 3 3:54pm

Any one with papillary thyroid cancer cut their laryngeal nerve?

planetsunrise | @planetsunrise | Jul 4 11:01am

I had thyroid cancer way back and a modified radical neck resection. Lymph nodes all malignant. At that time the Endo was recommending iodine but changed mind and he told me that he did not feel it would be beneficial for me. I believe it definitely depends of cancer type and spread. Mine was medullary. Ask lots of questions and expect answers. Good luck..a wicked journey. 💕

Colleen Young, Connect Director | @colleenyoung | Jul 9 1:05pm

@jtidaill, I hope you saw the helpful posts from fellow members @planetsunrise and @cherylharder2001.

It can feel like things are moving quickly and there is so much to learn. @jtidaill, have you spoken with your endocrinologist and oncologist in the meantime? What did you decide? And what went into your decision?