Thyroid Cancer Group: Introduce yourself and connect with others

Welcome to the Thyroid Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with thyroid cancer or caring for someone with thyroid cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
Feel free to browse the topics or start a new one.

Pull up a chair. Let’s start with introductions.

What type of thyroid cancer were you diagnosed with? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

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?

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I had a great experience with Dr. Staley at Mayo Clinic at Phoenix.

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Sorry spell check Stuckey.

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@ptc61

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?

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

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@ptc61

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?

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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!

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@koh

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!

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

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@fossfactor

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

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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!

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@koh

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!

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

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@fossfactor

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

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That’s great! I apparently confused the original post from the person looking for additional opinions from surgeons with you….I always advocate for waiting if possible so someone does not have their thyroid removed and then find out it wasn’t cancer. Cheers!

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