@shamb52 Forgot to add that the Affirma testing came out 50% for the one side where biopsies were benign on small nodules and on the other side, Affirma test was 90% which prompted the surgeon to recommend total thyroidectomy.

@shamb52
I had a similar scenario….I had a very large nodule growing and the biopsies were “inconclusive.” Which appears to mean, some were negative and a few positive. In my opinion, surgeons do surgery to correct the problem and minimize the risk. However if the surgery shows that the nodule was benign, you have the future of medication and never really needed the surgery other than the fact that the big nodule crushed the structures in the area.
Have you considered having a second opinion with a surgeon who does radiofrequency ablation(RFA)? Having the nodule ablated, will cause the nodule to shrink and allow your son to avoid the removal of his thyroid. In my opinion, this would be a great option!!
I had a large nodule and was being monitored by a surgeon at a cancer hospital for 10 years. I read about the RFA and found a surgeon who did the procedure (at another hospital nearby) . I was trying not to have my thyroid removed because of the location and possible issues with speaking (it could be career ending). My doctor thought it was worth looking into.
To qualify for (RFA) the new surgeon did another biopsy to see if I would qualify, and the specimen was sent for “AFFIRMA testing.” From what I have read, AFFIRMA testing has the highest accuracy rate for predicting thyroid cancer. Unfortunately, my test results gave me a high probability for Hurthle Cell Carcinoma, which is a type of thyroid cancer that can get into the circulatory and lymphatic systems and could cause the cancer to migrate due to the procedure. The surgeon told me that other types of thyroid cancer are sometimes able to have this RFA, however Hurthle cell is not a good one for it.
A few months later in 2022, I had a partial thyroidectomy and the findings were accurate… I had Hurthle cell Carcinoma….bummer!!
I had also been told about the risks with having to have a second surgery, however I do not think it is good to remove a necessary body part “just in case.” When I went into surgery, the surgeon knew my preference for a partial thyroidectomy, however he informed me that if he sees that the cancer has spread to the other lobe, he would have to remove the entire thyroid. I was lucky and only had a partial!

My half of a thyroid is working, but not well enough so I am on a very, very low dose of medicine. Getting regulated on medication has been VERY challenging (however that has been a familial issue with medications in general.) I am fortunate that I am only on thyroid medication (other than occasional tums/gaviscon)
I started out on “low doses” however had many side effects….(i.e., leg cramps, very bad hip pain, swollen hands, fatigue, weakness, insomnia, etc.). Although blood tests are used for monitoring, the blood tests are only one aspect of thyroid monitoring; how you feel is a BIG factor. When my dosage gets changed side effects improve or get worse immediately, so it is able to see the correlation.
Four years later, I have discovered that my previous doses of thyroid medication had always been way too high. Right now, the doctor feels I might be falling between two of the lowest doses. The doctor just changed my dosage to Tirosint 13 mcg 3x per week for two weeks and then 4x per week for one week. I am hopeful that this works…so far several side effects have already improved.
It’s a very tough decision when you are unsure if the surgery to remove your thyroid is actually necessary, so exploring the option to shrink the nodule with RFA seems like a great option. You can ask the surgeon if they send their biopsies for Affirma testing which appears to have the highest accuracy for predicting cancer so you have a better idea about what you are dealing with before surgery is considered. Good luck!