Found an endocrinologist who is willing to work with me on some more testing. Is is the Benign that is a false negative ? I am still holding off on surgery for now. Also difficult is the reaction from others. I'm also anxiously waiting my pathology results! Recently I change insurance and in doing so, my new doctor ordered a ultrasound which showed the nodule and he felt it was nothing to worry about. The original Afirma GSC validation study showed: 54% of ITNs return a benign Afirma GSC result (GSC-B) When categorized by the Afirma test as GSC-B, the risk of thyroid cancer is < 4% When categorized by the genomic test as suspicious (GSC-S), the risk of thyroid cancer is ~50% Our new findings show that the real-world experience supports this data, further demonstrating that the likelihood of malignancy in Afirma GSC-suspicious nodules is even greater than what was . [url=http://www.thyroidboards.com/showthread.php? I'm so happy because I just thought I would be struggling a lot more. He also says that out of 61 follicular neoplasms that were benign the Afirma test misclassified 31 of them as suspicious. Anyway, if these are to be become non-malignant, the rates of malignancy for the different Bethesda Categories are going to have to be adjusted downward. Third, I have no history of thyroid cancer (or any cancer) in my family. THE FULL ARTICLE TITLE Genes hold the information to build and maintain an organisms cells and pass genetic traits to offspring. The Afirma Xpression Atlas for thyroid nodules and thyroid cancer Later that week I received a call telling me it was suspicious and was referred to an ENT which I saw yesterday. 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.". I posted the below post on this forum on several different topics since 2013. 2020 May;162(5):634-640. doi: 10.1177/0194599820911718. I pointed out to them that since the nodule tested was less than 1cm the radiologist should not have sent it and they should not have tested it. Wong KS et al. 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. 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! t=5283[/url]. 1. Afirma Practice Resources I'm not against surgery if needed, but wondering shouldn't it be followed for a bit before such a drastic measure is taken. Papillary Thyroid Cancer: the most common type of thyroid cancer. I am wondering if anybody can comment on whether my case described below is considered to be reclassified according to the recently released guidelines. So we decided to remove the right lobe a week after the afirma results. ThyCa: Thyroid Cancer Survivors' Association, Inc. A thyroid nodule biopsy can be benign (normal), malignant (cancer) or indeterminate. She says very little, and if she does say anything, questions my reactions. I don't think the reclassification was mentioned specifically in the WSJ article. Any help really will be appreciated. Nishino M, Mateo R, Kilim H, Feldman A, Elliott A, Shen C, Hasselgren PO, Wang H, Hartzband P, Hennessey JV. 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. Long-Term Outcomes of Thyroid Nodule AFIRMA GEC Testing and Literature Review: An Institutional Experience. 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! 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. I'm determined to eek out the positive in this. 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 . http://www.glandsurgery.org/article/view/1002/1193, http://biotechstrategyblog.com/2012/06/veracyte-, Papillary and follicular thyroid cancer (differentiated), Multiple endocrine neoplasia type 2 (MEN2), Mental challenges of living with thyroid cancer, ThyCa fundraising and thyroid cancer research grants. 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. There are risks and benefits to any decision - and humans are very bad at assessing both. The biopsy (Afirma) was indeterminate with GSC suspicious with a 50% ROM. I wasn't one to resist. I opted for a total after much thought because I had three un biopsied nodules on the other side and was already hypo with my entire thyroid to begin with. Partially Encapsulated Follicular Variant of Papillary Carcinoma. government site. Thanks. So, I found a new endo, whom I absolutely loved at my first appointment. False positive rate of Afirma was 56% (32/57). 2021 Aug;31(8):1253-1263. doi: 10.1089/thy.2020.0969. Treatment like a cytologically benign nodule may be appropriate, including clinical correlation. 2) Partial or Total Thyroidectomy? Christmas got in the way, so January 22 is my date. Comparison of Afirma GEC and GSC to Nodules Without Molecular Testing BTW, I'm about to turn 50 and I have no thyroid issues other than this. Thyroid Cancer - Afirma& Genomic Sequencing Classifier - Veracyte Here's what a friend of mine wrote who is a retired neurologist: "They can both be right for different reasons, or from different perspectives. Epub 2020 Mar 17. Molecular markers can be used in thyroid biopsy specimens to either to diagnose cancer or to determine that the nodule is benign. The pathology database was searched for all thyroid nodules with Afirma test results over a three year period, 2013-2015. I don't understand the results , I thought that if the result is Benign it means you have no cancer genes and it is 95% sure you won't get cancer . First off, I understand about 25% of suspicious actually turn out to be cancer (not that I should just "roll the dice") 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. Some people say I should have had my thyroid out years ago. What do I do? the GSC is to further differentiate indeterminate FNA. A total of 27 patients with GEC benign nodules had surgery for nodule growth or patient preference and 3 had a papillary thyroid microcarcinoma discovered at final pathology while the rest were benign. Finally, the cells were sent to Afirma, Now I was growing concerned. This isn't saying that Afirma's test isn't useful. I called back and left them a message that was at home, to call me back. I understand that Afirma tends to have a lot of false positives, but it's supposed to be fairly accurate for negative results. Follicular Neoplasm. the nodule was only 1.5 cm and I really had no concerning symptoms. Thyroid cancer is found in ~5% of thyroid nodules, so the vast majority are benign (noncancerous). detect variants in greater than 50 genes. . With each step, I'd expected to hear, "yeah, you are a lumpy person, but no cancer." An official website of the United States government. 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]). Which if they used the YTD income they could clearly see that I qualified for a reduced billing. Clipboard, Search History, and several other advanced features are temporarily unavailable. While most thyroid nodules are non-cancerous (Benign), ~5% are cancerous. The Afirma Xpression Atlas for thyroid nodules and thyroid cancer The aggressive one wants to cover his ass in the tiny chance you have an aggressive thyroid cancer, and the wait and see one is playing the odds that there is nothing to worry about, and that unneeded surgery has risks that are higher than the benefits in your case. Here are some results/Info: No parathyroid tissue identified. official website and that any information you provide is encrypted Afirma; FNA; cytology; thyroid nodules. Suspicious readings of the Afirma gene-expression classifier include - Partial was recommended at first, though we are leaning total now with the remainder of tests now complete. I had numerous FNA biospy's last result "suspicious for follicular neoplasm " , the last ultrasound showed several microcalcifications on left and scattered microcalcification on the right. Nevertheless, I am reluctant to just proceed particularly for the following reasons: 5. While most thyroid nodules are non-cancerous (Benign), ~5-10% are cancerous. I think my biggest problem is what I read on the internet as far as all the problems afterwards. The surgeon was great. PollAfirma GSC Biospy Result - Thyroid cancer - Inspire Now can anyone shed some light on any negative effects of RAI on your body in the long-run? WHAT ARE THE IMPLICATIONS OF THIS STUDY? Wong KS, Angell TE, Strickland KC, Alexander EK, Cibas ES, Krane JF, Barletta JA. 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:( So far, no problems with calcium. I'm curious, if you had similar biopsy results and had surgery, was your final path malignant or not? -Male - Slightly Hypothyroid which began over the past year or so It mentions possible microcalcification, which has never come up before. If all nonsurgical GSC benign cases were truly benign, the chance a suspicious nodule was truly a thyroid cancer was 60% and a benign nodule was benign was 100%. 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 However, that information will still be included in details such as numbers of replies. t=5283], http://www.thyroidboards.com/showthread.php? Hi, I am joining this group because I was recommended surgery.. -Afirma Test: "Suspicious for Malignancy" - NEGATIVE for BRAF, MTC, RET/PTC1 and RET/PTC3 Noninvasive follicular variant of papillary thyroid carcinoma and the Afirma gene-expression classifier. Thyroid nodule: an abnormal growth of thyroid cells that forms a lump within the thyroid. 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! Indeterminate means the pathologist cannot tell if the nodule is benign or malignant with certainty. That not only had the nodule continued to grow (from 2.0 to 3.2cm over the last 2 years), but it is now showing increased central vascularity. SUMMARY OF THE STUDY I know how frustrating, scary and expensive this whole process is.I am sorry that you are going through it!! Thyroid Nodules: https://www.thyroid.org/thyroid-nodules/. I can learn to live healthier, and to appreciate each day, and to love and support more readily. I had a lobectomy sep. 30th. Gorshtein A, Slutzky-Shraga I, Robenshtok E, Benbassat C, Hirsch D. Eur Thyroid J. On the day before Thanksgiving, I returned home from work to discover a recorded phone message from the endocrinologist's office. Dincer N, Balci S, Yazgan A, Guney G, Ersoy R, Cakir B, Guler G. Cytopathology. Thyroid cancer is found in ~5% of thyroid nodules, so the vast majority are benign (noncancerous). Is one easier to recover from ? Would you like email updates of new search results? How should I proceed with these results? Epub 2018 Apr 10. The other side is that I had to have a 2nd biopsy done just to collect cells for AFIRMA. 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. 2017;45:308-311. I am so glad to find this as reading everyone's story helps me feel not so aloneTHANK YOU! 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. Endo M et al 2019 Afirma Gene Sequencing Classifier compared with Gene Expression Classifier in indeterminate thyroid nodules. I was told the only way to find out for sure is to have half my thyroid removed. BACKGROUND There was no follow up in 13% of cases and 87% were resected (50% lobectomies and 50% total thyroidectomies). 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. With these genetic tests, patients and physicians have more information to feel confident about avoiding surgery or pursuing it based on the test results. I feel good for 55 and slid through menopause easily. Two have been tested by FNA multiple times over 5 years If benign = no surgery, IF suspicious or malignant = surgery. SUMMARY OF THE STUDIES Thyroseq This occurs in 1520% of biopsies and often results in the need for surgery to remove the nodule. These results show an improved accuracy for the GSC as compared with the GEC. In May 2013 I spoke to Barbara Rath Smith the executive director of The American Thyroid Association and she said she was going to email articles as files to download and she did. How Does the Afirma Genomic Test Perform in the Real World?
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