I am 29 and diagnosed with FVPTC (follicular variant papillary) in June. I had a total thyroidectomy on the table when the biopsy results came back (I had another nodule in the other side that was also FVPTC). Now I have recurrent growth in the thyroid bed and one lymph node although my nodes came back clean after the surgery. Although my primary tumor was 4.1 cm, had capsular invasion, and was multifocal (1.2 cm tumor in other side), the team at Mayo has recommended to follow me with ultrasound only, no RAI. However, the team that did my second opinion feels that the recurrence, size, capsular invasion and multifocal nature make me a good candidate for RAI even though my MISCA score is only 4.something. Does anyone have any experience getting differing opinions? How did you make the decision about RAI? I am currently breastfeeding my last child (I have four under 5) and it would be difficult to be gone that long. But I am very nervous about how aggressive the cancer seems to be and from what I have been reading it is better to nip it in the bud with the RAI than go back and treat the recurrence later (although the lymph node is only 1 cm and the growth in the thyroid bed is <1 cm).
Any thoughts or resources/links would be greatly appreciated! I am so glad I found an online community. Believe it or not, my team leader at Mayo told me to beware of online communities because they would "scare me" into getting treatment I don't need. I am not sure what to think!