Afirma 75% risk: Did you choose total thyroidectomy?

Posted by nancydavidson @nancydavidson, Jul 21 4:14pm

Hi everyone. I'm 47 years old and am scheduled for a total thyroidectomy soon. I have seven thyroid nodules. My largest nodule, about 3 cm on the left side, was biopsied and found to be benign. The concern is on the right side, where an indeterminate nodule (Bethesda III/AUS) had Afirma testing that came back with an estimated 75% risk of malignancy.
I've seen multiple specialists. Two head and neck surgeons have recommended removing my entire thyroid because of the suspicious right-sided nodule and the presence of multiple nodules. My endocrinologist initially felt monitoring was an option, so making this decision has been very difficult.
My biggest fear isn't the surgery itself—it's life afterward. I'm worried about adjusting to thyroid hormone replacement, brain fog, fatigue, weight gain, hair loss, anxiety, and whether I'll ever feel like myself again. If the final pathology turns out to be benign, I also worry that I'll question whether removing my thyroid was the right decision.
If you had a total thyroidectomy for an indeterminate nodule or a suspicious Afirma result, I'd really appreciate hearing your experience.

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koh | @koh | Jul 22 9:11am

I only had a partial thyroidectomy , however prior to that I had Affirma testing which identified a high risk for Hurthle cell carcinoma. I had the nodule removed and was diagnosed with Hurthle cell carcinoma. Although a lot of people do well on medication right away, I am one of those people who have always had difficulty with side effects from medications and getting regulated on the thyroid medication has been challenging.

From what I read, Affirma testing has a VERY high rate of accuracy. Since most thyroid cancer grows slowly, the doctor might consider observing for awhile and repeating the tests in a few months. I was told that if the nodule grows quickly, it has a greater possibility of cancer. If it is unchanged, it might be able to be monitored. There is a procedure called Radio Frequency Ablation (RFA) that can be used to shrink the nodule which seems like a great option….if you qualify. I did not qualify due to the type of cancer the Affirma testing thought I might have, however it seems like a great option to allow you keep your thyroid. Always remember, a biopsy is only as good as the specific area the needle takes the cells from….false positives and false negatives are common.
In my opinion, total thyroidectomy will result in the need for medication which can be difficult for some people to get regulated. If the doctor states that you can wait and observe, it is always better to keep your own thyroid. You can also always ask for a second opinion. If you decide to have a second opinion, it might be worth going to someone who is trained in RFA; they can do the repeat FNA and determine if you are a candidate for the procedure. Good luck!