Thyroid Cancer Group: Introduce yourself and connect with others

I'm so sorry you are dealing with this. It must be extremely stressful to have a cousin diagnosed with papillary cancer which metastasized to his lungs 2 years after surgery. Do you know the specifics of the findings after his initial thyroidectomy? Was there spread into any surrounding tissue at that point? Did they determine if it had spread into any nearby lymph nodes? More distant lymph nodes? My point is that it's easy to assume it's an "apples to apples" comparison in this type of situation, when the likelihood is there are some significant differences.
That being said, I had a very small, highly suspicious nodule on my thyroid identified in January of this year. I am 63 and have had Hashimoto's syndrome since I was 16, which has required me to take thyroid medication on a daily basis since that time. In light of the fact I was already taking the medication and not wanting to mess around with the likelihood of multiple procedures, I opted to have a total thyroidectomy on Jan. 31st. I was pleased with my decision. Papillary thyroid cancer tumors were found in three different areas and on both sides of my thyroid. There was also cancer in two of the six lymph nodes they removed. In addition, two of my 4 parathyroid glands were removed. I recovered beautifully from the surgery and have had no other issues, other than some difficulty with calcium regulation due to the removal of the parathyroid glands.
My endocrinologist felt radioactive iodine treatment was not indicated and this concerned me. I opted for a 2nd opinion with Moffitt Clinic in Tampa. The endocrinologist at Moffitt agreed with my doctor, saying they have determined radioactive iodine was no longer standard protocol. While I'm still not totally convinced, I deferred to their expertise and have had no issues with labs or ultrasounds since that time.
Oddly, I was diagnosed with breast cancer in July. Although the breast cancer is also a papillary cancer, it is NOT related to the papillary thyroid cancer. Had a bilateral mastectomy in August with clear margins and clear lymph nodes.
The bottom line and answer to your question is this: I'm thrilled I chose to have a total thyroidectomy instead of a hemithyroidectomy. Which it actually ended up being an important choice, the peace of mind it gave me far outweighed any negative I could identify.
Finally, this stuff is scary. And super stressful. Don't hesitate one moment to get a 2nd opinion! I was worried it would upset my doctor, but she was pleased I did and pleased her treatment plan was approved by outside experts. It shocked me to find that 2nd opinion had such a big impact on my ability to relax. Another decision I'm glad I was bold enough to make.
I hope this helped in some way.
You have more support than you know.
Cathy

Update. Due to inoperable cancer on my trachea and small part of lymph nodes, I will have 6 weeks of radiation and chemotherapy starting in January 2025.

Depending on where you live: Mayo clinic or Memorial Sloan Kettering in NYC.

Mine was malignant but they got it all br taking out half of the thyroid.

From what I was told, nodules can grow but if they grow slowly they are less likely to be cancerous; and this seems like it’s growing fairly slowly….lucky you! If it continues to grow, you might want to look into being evaluated for radio frequency ablation to see if the nodule can be shrunk. My nodule grew slowly and then seemed to speed up. It was 5.6 cm when I had surgery and the size was causing issues. I was diagnosed with Hurthle cell carcinoma. I have a small nodule on my right side thyroid and we are observing it. Medication has been very difficult to get regulated on so I tend to think people should explore all possible options before having removal. Good luck!

I watched my nodules for 11 years until 13-15 mm.

In my opinion, there seems to be a lot of false positives, so if you had an FNA which gave results of possible cancer, and your nodule is small and not impacting any other structures, waiting awhile to see if it grows is worth it. There seems to be many stories of people who had thyroidectomy only to find out that it wasn’t cancerous (false positive). From what I understand, most thyroid cancer is slow growing and stays self contained. Some doctors might just want to eliminate the possible issue, however now that there are options for shrinking nodules (radiofrequency ablation) waiting to see seems like it might save people from thyroid surgery and the possibility of lifelong medication (which can be very hard to get regulated). In my opinion, waiting with frequent observation is worth it. If the nodule is growing, it might be worth going to a doctor who specializes in radiofrequency ablation to see if you are a candidate. They can assess the situation to determine if the nodule is cancerous (Affirma testing has the highest probability of predicting cancer) to see if you are a candidate. Shrinking the nodule could save your thyroid. Good luck!

I got a 2nd opinion from Dr. who said I shouldn’t have surgery at all, nor a CT scan, MRI or CT/PET. I should monitor with ultrasound. That’s 3 different opinions from 3 different surgeon. I need to find at least 3 surgeons who agree on the same treatment. Can anyone recommend a surgeon?

I got a 2nd opinion from Dr. who said I shouldn’t have surgery at all, nor a CT scan, MRI or CT/PET. I should monitor with ultrasound. That’s 3 different opinions from 3 different surgeon. I need to find at least 3 surgeons who agree on the same treatment. Can anyone recommend a surgeon?