My questions and her answers:
1. Is it standard protocol for a completion surgery for HCC to not check lymph nodes before completion surgery? According to the ATA guidelines an anterior neck dissection should have been done. This would be the area right above the thyroid. Why do you think they didn't do this? Probably just the preference of the surgeon.
2. RAI dosage of 148.6 - was this adequate for the type and size of my main tumor? That was a pretty big dose of radiation. I would have done 100miC, so 148.6 was adequate. I thought I read that when thyroid cancer spreads to lymph nodes, that it is not effective. That is normally for metastases or recurrence.
3. WBS results post RAI: uptake areas in neck vs 6 mos ultrasound. I know RAI can take up to a year to finish its work on cancer cells, but would this show up on an ultrasound 6 months later, or are the findings from the ultrasound in Dec/Jan something new? Uptake in neck area means that the radiation is killing thyroid and cancer cells, so it should not show up 6 or 12 months later.
4. WBS results post RAI: Lymphadenopathy?
Have you seen this in another ThyCa patient before? Yes, it is a typical finding in thyroid cancer patients.
Should I be worried? No.
5. TSH and FT4 levels:
Isn't .01 too low for TSH? Good for HCC. First year, yes. Second year, don't go above .5 What about bone loss issues brought on by being too suppressed? Bone loss is only an issue if you are at .01 for a long time.
What range do you think would be ideal for me? Don't go below .01; .1, or closer to this.
My Levoxyl dosage has been decreased from 175mcg to 125mcg, so why isn't my FT4 going down? (We didn't cover this question)
I am a little surprised my Levoxyl dosage was reduced from 175mcg to 125mcg; I thought I'd be around 150mcg. Didn't you lose a lot of weight? I did, but that was before the surgeries. Yes, your current weight calculates to 150mcg. Last month he changed my dosage so he could add in some T3, so I went down to 88mcg Levoxyl and 12.5 mcg T3, is that correct dosing? Yes, it brings the total amount close to 125mcg, total. You could probably be dropped down to 75mcg, but if you feel Ok on 88/12.5, then I'd have you finish out the year that way.
6. Mystery tissue issue - what would be your course of action? This is most likely scar tissue because it is not vascular. If it was, I would biopsy it right away.
7. Year one WBS, or monitor with ultrasound and stimulated Tg/TgAB testing, and TSH, FT4 tests? Most Endocrinologists are moving away from the WBS because it is not as sensitive as doing an ultrasound and stimulated Tg/TgAB testing. An unstimulated Tg/TgAB test should be done before the stimulated testing. I'd do a 6 month ultrasound with stimulated Tg/TgAB, another at 18 months; after the third year, you could be tested every 24 months.
Other things she said:
-The first 18 months are critical as this is when the highest rate of recurrence occurs, then at 5 years, and at 20 years.
-Even with a 3.2cm tumor, since you are under 45 years old, you are stage 1. If you were over 45 years old, then you'd be at stage 2. If your tumor was over 4cm, you'd be stage 3. But even at stage 3, the prognosis is still 80% after 20 years post diagnosis and treatment.-Ultrasounds should be extensive, covering levels 2-6 on both sides, as this is where metastases shows up first. This should be done every six months.
-Tumor size: The sizes noted were all different. 2.1, 2.7, and 3.2cm. I thought I read that FNAs could actually make it... spread? there is no real evidence of this. If it did grow, that would affect your prognosis.So, overall, my second opinion ENDO was very reassuring, and was able to confirm that my ENDO is not a clown. Yay!!! I feel so much better now about my care and treatments thus far, and my overall outlook.
