Indeterminate Thyroid Biopsy: this happens a few atypical cells are seen but not enough to be abnormal (atypia of unknown significance (AUS) or follicular lesion of unknown significance (FLUS)) or when the diagnosis is a follicular or hurthle cell lesion. Please Help! Some people say I should have had my thyroid out years ago. Thyroid cancer is found in ~5% of thyroid nodules, so the vast majority are benign (noncancerous). 5) What are your thoughts on these results? MeSH 2.) After some research of my own, I decided to leave it. The surgeon was great. Afirma GSC (NOT GEC) 50% Suspicious Fayadosky Oct 30, 2018 10:56 AM (edited Nov 04) Results came back 50% Suspicious for FN (Follicular Neoplasm) with positive HRAS c.18HRAS c.182A>G (Q61R) Negative for BRAF, RET/ptc1 and ptc3 Any Insights? 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. He said this Afirma test is wrong half the time misclassifying benign nodules as suspicious,(I'm sure it's even more than half!) The cancer-associated genes important in thyroid cancer are BRAF, RET/PTC and RAS. Rationale: Crosswalk to 81545 ($3,600) 81545 describes the original Afirma classifier; when . The other tested indeterminate, follicular atypia, cannot rule out follicular neoplasm. 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. Awaiting pathology. Cancer Cytopathol. My Endo thinks I should see a thyroid surgeon and my other doctor wants to repeat ultrasounds in 4 months, adopting a wait and see approach. Silaghi CA, Lozovanu V, Georgescu CE, Georgescu RD, Susman S, Nsui BA, Dobrean A, Silaghi H. Front Endocrinol (Lausanne). Any help really will be appreciated. Variant: Afirma XA: Informs selection of surgical and therapeutic decisions for Afirma GSC Suspicious, Bethesda V, and Bethesda VI nodules 1 Is clinically validated 1 and informed by The Cancer Genome Atlas (TCGA), 2 extensive published literature, and Veracyte R&D discovery using nearly 40,000 samples 3 t=5283[/url]. A group of expert pathologists have recently identified a subgroup of papillary thyroid cancer called noninvasive follicular variant papillary thyroid cancer that has a very low risk of relapsing after surgical removal. Thyroid cancer is found in ~5% of thyroid nodules, so the vast majority are benign (noncancerous). Overall malignancy rates were highest in the GSC group at 39%, compared to 20% and 22% in the no-molecular-testing and GEC groups, respectively (P = 0.0222) . 2021 Apr;10(2):168-173. doi: 10.1159/000509037. the GSC is to further differentiate indeterminate FNA. I was told that my thyroid needs to be removed (at least half, possibly all). In such cases, testing of molecular markers related to thyroid cancer may help determine the risk of cancer. Molecular testing for indeterminate thyroid nodules: Performance of the Afirma gene expression classifier and ThyroSeq panel. Follicular and hurthle cells are normal cells found in the thyroid. Of course I could have gotten very lucky and caught a cancer in it's early stages, but as well, I do not want to remove a healthy organ . Afirma was suspicious. I find out my biopsy results next week. 3.) So, what do I not know? And he said he doesn't think the Afirma test is as accurate as they say. Epub 2018 Apr 10. This nodule is solid, hypoechoic, increased central vascularity and now possible microcalcification. The aim of this study was to determine the clinical performance of the GSC as compared with the GEC at one academic medical center. The original Afirma gene test was a gene expression classifier (GEC) that used a technology called a microarray that results in a pattern of gene expression. One such test is the Afirma gene test. With each step, I'd expected to hear, "yeah, you are a lumpy person, but no cancer." 8600 Rockville Pike Please let me know what you think. But in my case, it was a risk well worth taking. I am not afraid of the surgery, only would really be disapointed if a vital organ was removed from my body for nothing. The surgeon recommended complete removal of my thyroid. 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. No parathyroid tissue identified. BACKGROUND However, the interesting twist was that cancer was not detected on the nodules being monitored, there was a little sucker hidden behind all these years according to my surgeon and this was why the pathologist at my local hosp could not come up with definitive conclusion as he/she was only focused on the biopsied nodules:( How could it be Benign on one side and Suspicious on the other ? In my opinion, and my surgeons, I think FNA and Affirma are only good tools if you have positive results. Thyroid. We had a long talk and discussed more conservative options, like a partial thyroidectomy, but no rush. Now having dodged a few close bullets, I was like wobble head to my new endo's treatment plan which included 100 mci RAI though after reading my path report that I may be at little higher risk with "variant" than most others. Sorry for such a long post, but as Im sure you remember, those first few days after receiving this type of news, Im full of questions and anxiety. Follicular Neoplasm. They call follicular neoplasms with hurthle cells FNOF. Therefore, a new version of the Afirma test was created called a gene sequencing classifier (GSC) to better predict thyroid cancers in indeterminate nodule while still being able to rule out cancer in benign nodules. Our offering enables physicians to answer multiple clinical questions for their thyroid patients using a single, minimally invasive fine needle aspiration (FNA) sample. The main goal was to help decide if my "suspicious for neoplasm" nodule was benign or not. The mindset of most surgeons is to cut it out - ignoring the risks of that approach. BACKGROUND The PubMed wordmark and PubMed logo are registered trademarks of the U.S. Department of Health and Human Services (HHS). My expensive, unsolicited, Afirma test results came back as negativegood thing I had already had my TT before I received the results; I have stage III pap/follicular thyca. While most thyroid nodules are non-cancerous (Benign), ~5% are cancerous. The aim of this study was to find out how often indeterminate thyroid biopsy specimens which were read as suspicious by the GEC test were ultimately diagnosed as noninvasive follicular variant papillary thyroid cancer after surgery. There was no follow up in 13% of cases and 87% were resected (50% lobectomies and 50% total thyroidectomies). What do I do? 2021 May 13;12:649522. doi: 10.3389/fendo.2021.649522. I also recently found *another* article written by an endocrine surgeon Sam Wiseman from the Department of Surgery ,St.Paul's Hospital University Of British Columbia for the site Gland Surgery where he also points out real concerns that half of patients(as I said I know it's more,from all of the people I have found posting on thyroid boards) with benign nodules wrongly classified as "suspicious" by the Afirma test are getting unnecessary thyroid surgery because this Afirma result influenced a lot of endocrinologists and their patients to have the thyroid surgery! The Xpression Atlas reports 905 genomic variants and 235 fusion pairs on GSC Suspicious, Suspicious for Malignancy (SFM), and Malignant FNA samples at the time of diagnosis. Is one easier to recover from ? Several thyroid nodules. I am very athletic , very healthy and happy ,don't want to give up any of that !!! They did not address that issue in their letter, just my income. Thyroid nodules are commonly found on ultrasound of the neck and the evaluation of a thyroid nodule may include thyroid biopsy. Like I said I'm doing ok and compared to what I see about the aftermath of having my thyroid removed, I sometimes just want to leave it alone and keep an eye on it instead. Will find out results in about a week. Then she tells me she's just had a "bad feeling" about my case from the beginning, and she wants me to have a TT soon. I scheduled the surgery for June 3rd but now I'm apprehensive because I don't want to have surgery if there's a chance of this to be benign. He then says, However,another interpretation is that the method can be used only to classify a nodule as benign and the "suspicious" category by GEC should not be used. I don't think the reclassification was mentioned specifically in the WSJ article. Genes hold the information to build and maintain an organisms cells and pass genetic traits to offspring. The Afirma test results came back Benign on left side and Suspicious 40% on the right side . Until now, Afirma has been available as two tests: Afirma GSC and Afirma Xpression Atlas (XA). 2021 Oct 7;5(11):bvab148. Sometimes you only hear the bad stories and not the good so I wanted to share mine. And the 3rd test was Afirma which came back "suspicious". 3) What do I need to know? Thanks for chiming in. The Annual International Thyroid Cancer Survivors' Conference and Regional Workshops, Download our free Low-Iodine Cookbook (PDF), Rally for Research and Thyroid Cancer Research Grants. for my adopted daughter as she's already lost her bio-parents and thus my husband and I became her new parents.I've stayed like zombie while awaited my total neck ultrasound results and they came back CLEAR any cancer spreading to lymph nodes..yey! The Afirma GSC is a cancer rule-out test with a high negative predictive value so that cytologically indeter-minate (Bethesda III/IV)2 thyroid nodules with an Afirma GSC benign result can be considered for clinical observation in lieu of diagnostic surgical resection (Fig. Have lots of decisions to make and just trying to do some homework. Here is what the Affirma test disclaimer said: Benign: Preformance characteristics not defined for nodules less than 1 cm diameter. Methods: Long story short, after consulting a reputable endo with 25+ years of exp and hearing that I needed a total neck ultrasound to rule out any possible cancer spread to my lymph-nodes, I could not help but ask him if thyroid cancer is the slowest growing of all cancers and why the concern of cancer-spread only after year after diagnosis.here's the bomb I was not ready for or did not expect: my doc's said that he could not rule out the possibility this cancer may have started back in 2002 but remained to be such a small size of 1.4 cm for all these years. First off, I understand about 25% of suspicious actually turn out to be cancer (not that I should just "roll the dice") My question is then I guess, is it really that bad afterwards managing levels and the other side effects post TT? The doctor is an Endocrine Surgeon that specializes in Thyroid/Parathyroid and Adrenal surgeries. Dr.Jerome Hershman. So we decided to remove the right lobe a week after the afirma results. Results came back 50% Suspicious for FN(Follicular Neoplasm) with positive HRAS c.18HRAS c.182A>G (Q61R) For nodules determined to be GSC Suspicious or with a cytopathology diagnosis of Bethesda V or VI, physicians ordered XA by checking a box. This occurs in 1520% of biopsies and often results in the need for surgery to remove the nodule. The Afirma MTC may not be billed separately using an additional unit or procedure code. . 1). Thyroid cancer support group and discussion community. 85% were benign. Nishino M, Mateo R, Kilim H, Feldman A, Elliott A, Shen C, Hasselgren PO, Wang H, Hartzband P, Hennessey JV. I had a total thyroidectomy in NYC. A thyroid nodule biopsy can be benign (normal), malignant (cancer) or indeterminate. So the probabilities of malignancy for the various Bethesda risk categories are going to change. benign), 25% of cases had follicular variant papillary thyroid cancer, 2% of cases had classical papillary thyroid cancer and 8% of cases had follicular thyroid cancer. Largest is 2.3(previously 1.8cm in 2014) different test center though. 2021 Aug;31(8):1253-1263. doi: 10.1089/thy.2020.0969. The two types that are set to be reclassified are the non invasive encapsulated type and the non invasive unencapsulated type. 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. Molecular markers can be used in thyroid biopsy specimens to either to diagnose cancer or to determine that the nodule is benign. Conversely, when evaluating nodules with suspicious molecular testing, surgical rates were 88% and 89%, respectively, for GEC and GSC (P = 0.853) . Thanks. Noninvasive follicular variant of papillary thyroid carcinoma and the Afirma gene-expression classifier. Papillary Thyroid Cancer: the most common type of thyroid cancer. 2016 Wiley Periodicals, Inc. Keywords: She admitted once she thinks cancer is unlikely. Thanks again, Ok so this is all brand new to me so please bear with me. She then tells me that at a recent conference, there was a lot of discussion of Afirma, and the general consensus seemed to be that it was good at detecting papillary cancer, but not necessarily follicular. I'm fearful this is a Hurthle Cell Lesion, and I do not like what I have read. Her only information about this comes from me, as she lives across the country and can't go to doctor's visits with me. Current analysis of thyroid biopsy results cannot differentiate between follicular or hurthle cell cancer from noncancerous adenomas. 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. One of these women member dacooper12 on Inspire in their ThyCa forum had the opposite result,which the studies show,that the Afirma test misclassifies a much smaller % of cancerous nodules as benign compared to the higher % of benign nodules it misclassifies as "suspicious. (The office had already explained that benign results would be sent in a letter, but suspicious or confirmed cancer results would warrant a phone call.) Thanks so much! The Afirma Genomic Sequencing Classifier (GSC) is used to rule out malignancy and reclassify cytologically indeterminate (Bethesda III or IV) nodules to molecularly benign or suspicious ( 5 ). The panel includes genes that have been identified See Somatic Mutation Testing - Solid Tumors guideline for criteria. And is this what that recent October 2015 WSJ article was hinting at.having people with certain types of cancer of the thyroid not undergo surgery at all but just adopt a wait and see posture? Clipboard, Search History, and several other advanced features are temporarily unavailable. Since that time, the pain has all subsided -- I think the biopsy just roughed things up, but when they calmed down, I felt no pain whatsoever, again. The results were suspicious of papillary cancer, but not conclusive. I didn't make a big deal about the cost because I am having surgery and they money I paid was my 20% co-pay and my out of pocket limit is almost met. Please, I am looking for any and all thoughts. Just underwent Afirma and Asurgen testing on the suspicious one. Molecular markers: genes and microRNAs that are expressed in benign or cancerous cells. 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. Epub 2021 Jun 22. Glad to have found Inspire to learn more, and support others, and receive support. If you have benign results they always wonder. I knew it was not good news. These results show an improved accuracy for the GSC as compared with the GEC. I had a biopsy for 4 nodules 2 mos ago. At least 1 genomic alteration was identified by the expanded Afirma XA panel in 70% of medullary thyroid carcinoma classifier-positive FNAs, 44% of Bethesda III or IV Afirma GSC suspicious FNAs, 64% of Bethesda V FNAs, and 87% of Bethesda VI FNAs. An official website of the United States government. Advice needed please. 4. Thoughts or experiences?? These gene patterns are better at ruling out thyroid cancer in an indeterminate nodule than confirming cancer. Tumor is partially encapsulated with no capsular invasion or extrathyroidal extension identified. http://www.thyroidboards.com/showthread.php? I refuse to rush as there are long-term consequences either way. 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. I found many people including more than a few on the Inspire site in their ThyCa forum who have unfortunately gotten false suspicious results from this test and as a result had totally unnecessary thyroid surgery,including this poor woman on thyroidboards.com who is the worst case I found so far,the Afirma test told her she had an 80% highly suspicious result and because of this her endocrinologist told her to expect cancer and that she had an 80% likelihood that her solid hypoechoic 1- 1 1/2 cm mildly suspicious as follicular neoplasm nodule was cancer,so she had totally unnecessary thyroid surgery for a benign nodule and was scared to death for nothing! I had a lobectomy sep. 30th. Thanks. What have been your experinces with AFIRMA? She has other small nodules on her other thyroid lobe. Second, this nodule has been stable and has not grown from the first day it was discovered. The moment that I've been so nervous about finally came yesterday. SUMMARY OF THE STUDIES Thyroseq I hope this helps calm some fears for others who may be going through the same thing. So, if you were going to go down that route then this will save you from having a second biopsy. 2017 May;125(5):313-322. doi: 10.1002/cncy.21827. He tried to console me but he was also upset. GEC's SE and SP among studies ranged from 78.0 to 100% and 7.7 to 51.7%, respectively. 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. I did not get to go under the knife for my TT til this past March. I was told the only way to find out for sure is to have half my thyroid removed. Without my knowledge 4/5 of my FNA biopsies came out fine but 1/5 had "atypical" cells and they were sent to Afirma without my knowledge. SUMMARY OF THE STUDY I am hesitant to go to surgery with the 30% cancer chance without more information. More than one doctor has told me I should just have surgery, at least half the thyroid, maybe the whole thing. So I was reading about the new kind of fna biopsy called Afirma, and I guess that my question is, is it worth getting it as a second opinion or should I go through with the surgery because of the results not being undetermined. The two most common molecular marker tests are the Afirma Gene Expression Classifier and Thyroseq, A publication of the American Thyroid Association, Change In Thyroid Nodule Volume Calculator, Find an Endocrinology Thyroid Specialist, Clinical Thyroidology for the Public (CTFP). Genes: a molecular unit of heredity of a living organism. The rest were called benign by the GEC. The other approach to molecular diagnosis of thyroid cancer is the measurement of oncogenes such as BRAF on FNA to make a positive diagnosis of thyroid cancer in cytologically indeterminate FNA biopsies. All I can say is that in reviewing my ultrasounds and the report from the interventional radiologist and the Affirma report, I have noticed that there are inconsistencies in even the reported measurements of the nodules and now that I have read further into studies done on people undergoing thyroid removal after getting "Suspicious"/40% of Cancer Affirma results, there are many more false positives than Afirma would have you understand. 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! The Afirma MTC may not be billed separately using an additional unit or procedure code. Used for FNA suspicious nodules (bethesda V-VI) or nodules deemed suspicious by the GSC classifier. I am so glad to find this as reading everyone's story helps me feel not so aloneTHANK YOU! I've read a lot about this test (both good and bad). A. He recently called me back and said that my criticism of the test is valid. 1) Cytologist did not classify this as a Hurthle Cell Lesion Is it a Hurthle Cell Lesion due to predominance of Hurthle Cells? Partially Encapsulated Follicular Variant of Papillary Carcinoma. I'm so happy because I just thought I would be struggling a lot more. http://www.glandsurgery.org/article/view/1002/1193. The authors concluded that a GEC suspicious test result may include noninvasive follicular variant papillary thyroid cancer as well as classical papillary thyroid cancer. The original Afirma Xpression Atlas (XA) panel reported on 761 genomic variants and 130 fusion pairs from 511 genes ( 6 ). A test with a better NPV (negative predictive value), would be more usefu than ever in that situation. He recently emailed me back and said,as we discusssed on the phone,he agrees with many of my concerns about the Afirma test. It's really upsetting to suddenly be thrust into this with no symptoms, etc. Repeat Fine Needle Aspiration Cytology Refines the Selection of Thyroid Nodules for Afirma Gene Expression Classifier Testing. Afirma said NEGATIVE for BRAF and Meduliary but still assigned a classification of "Suspicious" with 40% chance of cancer. My oldest daughter has a friend who has survived thyroid cancer, and SHE was sure to tell ME about that. The Affirma Xpression Atlas is based on RNA sequencing. official website and that any information you provide is encrypted I just wrote that these are 25% of all thycas, but I have read just recently that the figure might be anywhere between 15-25% because there are varying standards for diagnosing these between different institutions. eCollection 2021 Nov 1. I have met with multiple surgeons, and am meeting with the one I am selecting on Friday and wanted some info on what to do, and how to proceed. The PPV was 50% among GSC suspicious nodules when a variant or fusions was identified, compared with 44% among GSC suspicious nodules when no variant or fusion was identified (p = 0.77 [2]). Afirma BRAF V600E o Afirma BRAF testing may be considered for either GSC or FNA suspicious or malignant results. So, I found a new endo, whom I absolutely loved at my first appointment. Don't want to gain weight or feel less optimal then I am now. I'm curious, if you had similar biopsy results and had surgery, was your final path malignant or not? Patient medical records were retrospectively reviewed for clinical history, FNA results, radiologic findings, management and follow-up. Which means I would still be paying this amount to the hospital if I didn't pay it to Affirma. The pathology database was searched for all thyroid nodules with Afirma test results over a three year period, 2013-2015. undefined will no longer be visible to you including posts, replies, and photos. Forth, I have absolutely no symptoms and feel fine. A publication of the American Thyroid Association, Summaries for the Public from recent articles in Clinical Thyroidology, Table of Contents | PDF File for Saving and Printing, THYROID CANCER Thyroid 29:11151124. However, the results are not conclusive. eCollection 2021. Follicular and hurthle cells are normal cells found in the thyroid. One > 4cm, but has tested benign by FNA 4 times So now I feel I have no choice to take it out (the nodule also grew .5 cm since the Aug test). Since then, I've had yearly scans (ultrasounds) and two biopsies, both came back negative. I don't trust this new Afirma thyroid test for very good reasons. Unable to load your collection due to an error, Unable to load your delegates due to an error. Mine did, and that can also be a sign of cancer. I had another biopsy which came back showing "Atypical cells". government site. Thyroid nodule: an abnormal growth of thyroid cells that forms a lump within the thyroid. 6. Bugs me. The current Afirma Genomic Sequencing Classifier (GSC) demonstrates improved specificity, suggesting more nodules will have a benign result (benign call rate [BCR]), but independent data are needed to confirm this in clinical practice. I don't know if I'm speaking too soon, but the pain isn't as bad as I thought it would be. I have 1.6 cm nodule on my right lobe. Among the 25 papers that approached Afirma GEC, four studies enrolled an additional number of 635 TNs from 596 patients to evaluate the Afirma GSC (16, 17, 57, 70). Living beings depend on genes, as they code for all proteins and RNA chains that have functions in a cell.

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