FNAB inconclusive and genetic testing recommended
I had a TRADS 5 nodule that was biopsied yesterday which supposedly came as Bethesda 4 and recommended to have it genetically sequenced for definitive diagnosis. I’m not sure I want it done. Trying to weigh the risks versus benefits.
Interested in more discussions like this? Go to the Thyroid Cancer Support Group.
My first thyroid nodule biopsy came back indeterminate. We waited two months and had a second biopsy. This time they included the AFIRMA genomic sequencing test, which came back with 75% risk of malignancy. This was an expensive test, though it was covered between Medicare and my medical insurance company.
With this information, my endocrinologist recommended surgery to remove the part of my thyroid with the nodule. After surgery, the pathologist reported a carcinoma. Six weeks later I had surgery again to remove the rest of my thyroid, which came back negative for carcinoma. Following this second surgery, I started taking Synthroid (levothyroxine sodium tablets, USP) every day.
A month or so later, I had radioactive iodine treatment, which was just swallowing a pill. This was meant to kill off all the remaining thyroid cells in my body.
There are more details to my story, though this was the “high” points of my experience.
@aime, I hope you saw the helpful post from @johnwx. You may also be interested in this related discussion that @gillsden started:
- Thyroidectomy: What to choose based on 70% cancer probability?
https://connect.mayoclinic.org/discussion/thyroidectomy-based-on-70-cancer-probability/
Aime, do you have a family history of thryoid cancer or other risk factors that might suggest genetic testing would be beneficial?
Hello - I had a 70% chance of having cancer on my right lobe based on Thyroseq molecular testing. Two surgeons recommended total thyroidectomy, one suggested partial. After much thought and research and help from the folks here I decided on the partial thyroidectomy. It turns out that I did have follicular variant of papillary thyroid carcinoma and very fortunate that it was removed without any further complications. I am not the type of person who feels comfortable with a wait and see attitude, so I was very satisfied with my decision. I did hope that the other half of my thyroid would take over producing enough hormone to make up for the side removed, but it did not and have I started synthroid and so far so good, I wish you the best of health!
@johnwx, and how are you doing now? Are you currently in remission? What is your followup schedule?
No family history or other risk factors. They sent my sample out for affirma testing one week ago and I have a consultation with an endocrine surgeon at UW Health Hospital this week.
My follow up schedule is for blood work with another ultrasound of the neck before meeting with my endocrinologist before summer. It is only after these tests with my endocrinologist that she would say I am in remission.
My affirma test came back as 4 -% chance of cancer. I’m choosing to wait 6 months and do another ultrasound.
I hope this is the right choice. My nodule is 1.3 cm