I saw my endo today. She won't order PET/CT to look further for the source of the Tg (she's pretty insistent about this, which is annoying, because I'm under the impression that's the most logical next step).
My endo is pro-another radioactive iodine treatment dose (the kind where I'm isolated for 7 days), but without knowing exactly where the Tg-making tissue is and having an idea of its dimensions, I feel uncomfortable moving forward with another round of RAI. I had 5 lymph nodes removed last Feb. in initial surgery, and all 5 were malignant. So chances are there are more malignant lymph nodes, although none are currently showing themselves to be enlarged and/or suspicious. Humpf.
Endo is referring me to a general surgeon for consultation, but it's not the
expert thyroid surgeon I want (I'm on HMO and endo says she cannot refer me to
the awesome USC out-of-network surgeon since she has referred pts. to this in-network general surgeon for same type of surgery--endo says asking her to refer me to
out-of-network surgeon is asking her to do the impossible), and in the end, my
endo thinks I should just have another RAI treatment, anyway, and I'm sure she's
expecting me to meet with the surgeon, decide to do RAI and come back to her
(endo) for RAI.
Incidentally, while all this has been going on, I am paying out of pocket to get an
expert second opinion on my original pathology so I can know for sure whether my original diagnosis of papillary carcinoma (no variant) was accurate and move forward with treatment more confidently. It will probably take several weeks to get the second opinion (just FedEx'd the package with my tissue samples today...it’s going to Dr. Virginia LiVolsi, an expert in thyroid cancer pathology, at the Hospital of the University of Pennsylvania).
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