Thanks for chiming in. The authors reported the following rates of final diagnoses for these specimens: 65% of cases had no cancer (ie. Anyone have AUS nodule with suspicious Afirma results end up cancerous? So much good info but I wish I had read this before I had agreed with my endo on his prescription for rai:( In fact, i am currently on my fifth day of my 7-10 day rai staycation. No it's actually the opposite.Many studies by different endocrinologists that were published in The American Thyroid Association's Journal in 2012 found that only 4% of the time the Afirma test falsely says cancerous nodules are benign but it falsely calls benign nodules ''suspicious'' at least 48% of the time! I hadn't told my two college-age daughters about the series of more and more concerning doctor's visits, but knew I couldn't get through a long day with them at home without showing my emotions. (And myself.) Thank God I have good insurance but in the end my medical out of pocket for all of this could cost me up to $4,500. Neither will talk to the other. Cancer-Associated Genes: these are genes that are normally expressed in cells. Genes hold the information to build and maintain an organisms cells and pass genetic traits to offspring. Dr.Hershman then says, In a world where there are unlimited financial resources,both the oncogene and the GEC methods could be applied to all indeterminate nodules,but this approach is not practical currently. Disclaimer. It just really annoys me that doctors can order tests that cost us money without our consent. It came back 99% that its cancer. http://biotechstrategyblog.com/2012/06/veracyte- afirma-gene-expression-classifier-thyroid-cancer- diagnostic-test.html/ I'm sure that over the years as more people have this Afirma test done,there will be even more people posting on thyroid and general health boards about getting false "suspicious" results from it! Afirma said NEGATIVE for BRAF and Meduliary but still assigned a classification of "Suspicious" with 40% chance of cancer. Clinician should therefore exercise caution in using this result for treatment decisions. Noninvasive follicular variant of papillary thyroid carcinoma and the Afirma gene-expression classifier. I know how frustrating, scary and expensive this whole process is.I am sorry that you are going through it!! I don't trust this new Afirma thyroid test for very good reasons. I have found this community very informative, thank you. 2020 Sep;8(9):e1288. I was told that my thyroid needs to be removed (at least half, possibly all). A Indeterminate Suspicious (ROM ~50%) Negative NRAS:p.Q61R c. 182A>G TSHR:p.M453T c. 1358T>C ISTHMUS A UPPER MIDDLE LOWER RIGHT LEFT See Xpression Atlas results overview page for additional information . Thoughts or experiences?? The pathology database was searched for all thyroid nodules with Afirma test results over a three year period, 2013-2015. If all nonsurgical GEC benign cases were actually benign, when evaluating the cases that had surgery, the chance that a GEC suspicious nodule was actually cancer was 33.3% and the chance that a GEC benign nodule was actually benign at surgery was 98.2%. Thyroid cancer support group and discussion community. This occurs in 15-20% of biopsies and often results in the need for surgery to remove the nodule. Afirma Gene Expression Classifier: a test for a group of molecular markers in thyroid biopsy specimens in order to determine the likelihood that a thyroid nodule is benign or cancerous. I'm afraid I feel ok now then all of a sudden will begin feeling horrible. Epub 2020 Mar 17. It mentions possible microcalcification, which has never come up before. I called my husband before I even received the callback, and couldn't stop crying. Largest is 2.3(previously 1.8cm in 2014) different test center though. BACKGROUND I didn't want to live with the risk, especially already being hypo and having nodules on the other side slowly growing. 2021 Aug;31(8):1253-1263. doi: 10.1089/thy.2020.0969. He is very calm and laid back, and prefers to take a more controlled approach to everything, but I'm feeling a more aggressive approach is warranted. An official website of the United States government. On cytologic evaluation 3.0% of the cases were non diagnostic (ND), 9% benign, 62% AUS, and 26% suspicious for neoplasm (SN). This all new to me and I have a lot to learn. Thyroid nodules are commonly found on ultrasound of the neck and the evaluation of a thyroid nodule may include thyroid biopsy. I think my biggest problem is what I read on the internet as far as all the problems afterwards. It was .62cm by then. Glad to have found Inspire to learn more, and support others, and receive support. Are you sure you want to block this member? 3.) These gene patterns are better at ruling out thyroid cancer in an indeterminate nodule than confirming cancer. One has tested benign on several FNAs, is cystic, and has remained consistent in size. 2021 Oct 7;5(11):bvab148. What should I know? Choosing to have the surgery was the most difficult decision ever, since I wasn't sure if my nodule was cancerous or not, and of course I didn't want to go through the surgery all for nothing. The Afirma Genomic Sequencing Classifier (GSC) (Veracyte, San Francisco, CA) is a cancer rule-out test that partners whole transcriptome RNA sequencing with machine learning to categorize nodules as benign or suspicious. How should I proceed with these results? There are risks and benefits to any decision - and humans are very bad at assessing both. -Afirma Test: "Suspicious for Malignancy" - NEGATIVE for BRAF, MTC, RET/PTC1 and RET/PTC3 Would you like email updates of new search results? ThyCa: Thyroid Cancer Survivors' Association, Inc. My oldest daughter has a friend who has survived thyroid cancer, and SHE was sure to tell ME about that. http://onlinelibrary.wiley.com/doi/10.1002/cncy.21455/full. I opted to have the TT and it turned out it was cancerous and had spread to a few lymph nodes, so then I had right and left central neck dissections as well. I have since found several more women who had false Afirma test results and had surgery and their nodules were also benign! Meanwhile I read a recent WSJ article about patients with ACTUAL thyroid cancer being offered a wait and see approach as there are so many issues after surgery--not just discomfort issues like fatigue, weight gain and so forth but also secondary cancers. I am so new to all this that I don't know what this means. I understand that Afirma tends to have a lot of false positives, but it's supposed to be fairly accurate for negative results. I have multiple nodules. But, I am concerned about the report I just received. I was informed in August of 2013 after a FNA that one of my nodules was suspicious and the recommendation was a TT. The Afirma gene sequencing classifier (GSC) performs better in indeterminate thyroid nodules than the Afirma gene expression classifier (GEC). something nodule with a majority of Hurthle cells with normal thyroid blood tests and the Afirma test came back 40% suspicious,it grew even bigger in two years and was hypoechoic and vascular on the ultrasound like mine and she said this concerned her and the radiologist,she said (she said my nodule sounds a lot like hers except hers was bigger) so she had half her thyroid out and this nodule was benign! There was no follow up in 13% of cases and 87% were resected (50% lobectomies and 50% total thyroidectomies). At the end of his great article in the journal Clinical Thyroidology August 2012 criticizing the inaccuracies and unreliabilities of the Afirma test, endocrinologist of 50 years Dr.Jerome Hershman says, Currently the Veracyte Affirma GEC method "retails" for 3,350 plus 300 for cytopathology. They sent me home with 125mcg of Synthroid, calcitrol, and calcium. Thyroid fine needle aspiration biopsy: a simple procedure that is done in the doctors office to determine if a thyroid nodule is benign (non-cancerous) or cancer. This process has helped me to realize that there is a lot that physicians do not understand--much more than I knew. All my blood tests and tsh levels are in the normal range. Any help really will be appreciated. I'm looking for any and all help and/information you can share with me. Please click on this link below about the woman with a 1-1 and half cm solid hypoechoic nodule who had an inconclusive Fine Needle biopsy which was suspicious as a follicular neoplasm and mine is being called a follicular neoplasm with oncocytic (hurthle cell features) ,this woman had her FNA nodule sample tested by the veractye Afirma Test which is what I had done,the results came back telling her that her that their results on her FNA was highly suspicious and that because of this her endo told her she had an 80% chance of having thyroid cancer and so she had her thyroid out and found out it was benign! Living beings depend on genes, as they code for all proteins and RNA chains that have functions in a cell. I'm curious, if you had similar biopsy results and had surgery, was your final path malignant or not? In such cases, testing of molecular markers related to thyroid cancer may help determine the risk of cancer. Bugs me. Thyroid nodules are very common, occurring in up to 50% of individuals. False Positives. Dr.Jerome Hershman. o The Afirma MTC testing must be billed as part of the Afirma GSC. As I have learned on this board, just 'taking a pill' for the rest of your life isn't as easy as it sounds. How they found it was my complaint of feeling tired all the time. You cannot become a thyroid cancer specialist in 24 hours needless to say. Euphemia I just read your post about classifications changing. 2.) Thanks so much! For one thing, I had some pain on one side after biopsy. Results came back 50% Suspicious for FN(Follicular Neoplasm) with positive HRAS c.18HRAS c.182A>G (Q61R) Her only information about this comes from me, as she lives across the country and can't go to doctor's visits with me. Here n this 2014 discussion member Olivia-T who was 69 when she posted this and had hurthle cell neoplasm that tripled in size in 10 months,and got a 40% suspicious from the Afirma test,and did post a follow up that did turn out to have thyroid cancer,says here that her oncologist said that her last two patients who had surgery also because of the 40% suspicious for cancer DNA test turned out to have benign tumors. So, I found a new endo, whom I absolutely loved at my first appointment. It is illegal for auto mechanics to do work on our car without an estimate, or accountants, lawyers etc but doctors and medical facilities can just run us into BK without any regard. In this study from Boston, 63 thyroid surgical specimens were reviewed from patients whose thyroid biopsy samples were read as indeterminate and in whom the GEC test was reported as suspicious. And it keeps growing. Otolaryngol Head Neck Surg. The doc mentioned the thyroid and upon a physical exam felt the nodule, leading to the rest of the testing. I am wondering if anybody can comment on whether my case described below is considered to be reclassified according to the recently released guidelines. 5) What are your thoughts on these results? Ultrasound reports unfortunately not very informative other than size. This nodule is solid, hypoechoic, increased central vascularity and now possible microcalcification. However, FVPTC is currently classified as a type of "papillary" carcinoma, so the rate of diagnosis is also going to fall pretty substantially. microRNA: a short RNA molecule that has specific actions within a cell to affect the expression of certain genes. PMC The main goal was to help decide if my "suspicious for neoplasm" nodule was benign or not. GEC's SE and SP among studies ranged from 78.0 to 100% and 7.7 to 51.7%, respectively. They were incredibly supportive and also concerned. Did your Afirma results show calcification? She also said that her surgeon told her he's had five patients that had a suspicious result from the Afirma test,and then when their nodules were removed and tested they too were benign! Comparison of Afirma GEC and GSC to Nodules Without Molecular Testing in Cytologically Indeterminate Thyroid Nodules. I almost want to cancel the surgery. Additionally, there is an increase in the benign call rate with GSC, which in this study decreased surgical interventions by 68%. Nevertheless, I am reluctant to just proceed particularly for the following reasons: the GSC is to further differentiate indeterminate FNA. See Somatic Mutation Testing - Solid Tumors guideline for criteria. The rate of malignancy in nodules suspicious by Afirma was 18.3% (11/60). Epub 2018 Apr 10. I asked him if I could get another opinion on my FNA slides and he said yes and I asked him who he could recommend that is very good with thyroid pathology and FNA's and he recommended quite a few Dr.'s so I asked about any at The Mayo Clinic where he used to work and did that Afirma study from,and he recommended three Dr.'s there. Sometimes you only hear the bad stories and not the good so I wanted to share mine. But in my case, it was a risk well worth taking. Afirma GEC or GSC a gene-expression classifier that identifies biopsies as "benign" or "suspicious," and mir-THYtype an mRNA-based classifier test. She says very little, and if she does say anything, questions my reactions. Each wait has been tough, but the wait after the biopsy was excruciating. Thyroid 29:11151124. I did not necessarily like that simplistic answer and I told him, you have nothing to compare it to, since he had not seen my past records. suspicious - ~50% risk of cancer. At first it sounded like only the encapsulated variety was going to be included in the reclassification, but more recently it seems that non-encapsulated and non-invasive FVPTC is also going to be included. The surgeon recommended complete removal of my thyroid. Can you expand on this? So, in 2014, Thanksgiving was about telling them there was something going on. and I just found out that my Afirma test isn't being paid for by my insurance company on the grounds that its test is considered "experimental.". They billed my insurance $6684 - my ins negotiatied $3370.40 they have billed me for 883.71, I applied for a reduction but they say I make too much income so I am not eligible for one. I called back and left them a message that was at home, to call me back. undefined will no longer be visible to you including posts, replies, and photos. However, researchers found that when the Afirma GSC identified a thyroid nodule with a TSHR mutation as suspicious, the risk of malignancy was 15.3%, a level of risk for which most physicians. I wanted to share my Thyroidectomy story because like most of you I was super scared and nervous about surgery but my surgery went great and I've had no complications. Because of this rather benign course, some pathologists have even questioned whether this subgroup is a cancer after all. The panel includes genes that have been identified What was your experience? Of the 164 GSC nodules, 29 (17.6%) underwent thyroid surgery. Christmas got in the way, so January 22 is my date. That didn't sit well with me. http://www.thyroidboards.com/showthread.php? Patients with thyroid nodule biopsies with indeterminate cytology results were chosen for additional genetic testing; the Afirma GEC (during the period February 2, 2011July 11, 2017) or the Afirma GSC (during the period July 11, 2017December 19, 2018). This site needs JavaScript to work properly. Please, I am looking for any and all thoughts. You started down the rabbit hole by focusing on your thyroid gland for no good reason, since the melanoma is not related to anything regarding your asymptomatic thyroid. Background: The Afirma Gene Expression Classifier (GEC) has been used to further characterize cytologically indeterminate (cyto-I) thyroid nodules into either benign or suspicious categories. The mindset of most surgeons is to cut it out - ignoring the risks of that approach. Since then, I've had yearly scans (ultrasounds) and two biopsies, both came back negative. The Afirma Genomic Sequencing Classifier (GSC) result was "Suspicious," but the usual orange color (representing ~50% risk of malignancy) of this result is replaced with gray, foreshadowing that . Also is anybody here familiar with "Afirma Thyroid Analysis" It's really upsetting to suddenly be thrust into this with no symptoms, etc. My doctor then sent me to an endocrinologist for a biopsy which came back with atypical but inconclusive results. Wong KS, Angell TE, Strickland KC, Alexander EK, Cibas ES, Krane JF, Barletta JA. Second, this nodule has been stable and has not grown from the first day it was discovered. Many endocrinologists have written articles in The American Thyroid Association's journal criticizing the inaccuracies and unrelabilities of this recent Afirma test, the strongest criticism and concern is by endocrinologist of (*50* years!) I was told my path report from the local hosp was inconclusive so it had to be sent to Mayo Clinic and after almost three weeks after my surgery, I got the word that it was cancerous. Afirma BRAF V600E o Afirma BRAF testing may be considered for either GSC or FNA suspicious or malignant results. The surgeon was great. Afirma was suspicious. Unauthorized use of these marks is strictly prohibited. Only when I had a follow up visit with a cardiologist in JAn.of 2016 he noticed the results after requesting the previous scan results. Cancer Cytopathol. When the nurse called she couldn't even tell me results over he phone -- she said she didn't know them -- but set up an appointment for end of the following week -- another wait. My Afirma results also came back as "suspicious." I had a biopsy for 4 nodules 2 mos ago. Wow! Then in December 2014 I thought to have it checked again, with the same results although this time I had it send for the Afirma testing which I was told is more accurate test for cancer.

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