Hi. I just joined this forum (I am in the US) so I apologize for my late reply to your post. I never even knew what a thyroid nodule was until a few were "incidentally" found when I was sent for an ultrasound of my right neck--The ordering physician did not request that my thyroid even be scanned--only my right neck. This was due to a very shallow Melanoma that was excised on my right upper arm, along with a Sentinel Lymph Node close to my right neck. Both surgical excisions (the wide excision and the sentinel lymph node) were found to be free of Melanoma cancer cells and the ordering physician wanted, as a precaution, to do an ultrasound of my right neck and my right axiallary breast area. The right neck and right breast showed nothing problemstic or suspicious. But the radiologists decided to throw in scans of the left neck and the thyroid, and I was then told two nodules on the right thyroid merited FNA. I have never had any thyroid disease symptoms in my 58 years of life and my thyroid blood tests right before the FNA were all normal. I have no problems with swallowing and the endocrinologist I saw for the first time told me he would never have found the modules by manual exam.Â
The two nodules on the right thyroid came back just fine. But right during the procedure the interventional radiologist announced that he was going to biopsy a left thyroid nodule and the report from the procedure said there were "atypical cells" and that they had decided to do a second pass to send for Afirma testing. They also put down in the report that went to Afirma a larger measurement of the left thyroid nodule that differed from the original ultrasound report. Now I have an Afirma report that says NEGATIVE for BRAF mutation, NEGATIVE for Medulliary Cancer but "Suspicious" on GEC (Gene Expression Classifier) with Afirma's assignment of a 40% chance of cancer.Â
The endocrinologist that saw me before the Afirma Report and had said the chances of my having thyroid cancer were very low now says based on Afirma's report I should see a Thyroid surgeon. My oncologist says the Afirma Report is great news and I should just repeat the ultrasound in 5 months. I told them I was very confused by this Afirma stuff and asked them to confer with one another. Ha ha.
Meanwhile I had the good fortune of sitting down with someone who has a PhD in biogenetics/mathematics and who works with companies who do stuff similar to Afirma/Veracyte. He read the 4-5 studies I sent him that report how a VERY large percentage of people (like 80%!) with my type of Afirma report who have their thyroid taken out end up finding out after surgery that their thyroid was BENIGN. He explained the math and likely algorithyms that Afirma engages in in its proprietary testing in a simple-to-understand-way. (My math "expertise" was arrested in 11th grade!) Basically he said that they compare my cells' gene expressions to populations of people's gene expressions who have malignancy and people whose gene expressions are benign and that I fall within a population that matches neither but instead of saying WE DO NOT KNOW, they instead label people like me "SUSPICIOUS" with a 40% chance of thyroid cancer. He said his own personal feeling was that most endocrinologists out there haven't a single clue what the math and science is behind the Afirma test and that if he were in my shoes, he would not rush into any surgery especially without any history of thyroid problems or any symptoms whatsoever.Â
I am seeing an expert in this field in a few weeks.