They sent me home with 125mcg of Synthroid, calcitrol, and calcium. I'm determined to eek out the positive in this. The doctor is an Endocrine Surgeon that specializes in Thyroid/Parathyroid and Adrenal surgeries. 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. 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 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 . I regard this as a substantial cost for it's possible contribution to avoiding diagnostic surgery,in part because it also misclassifies lesions as suspicious about half the time. (although it is so small, you can see it in my neck). If you have benign results they always wonder. Without my permission my specimen was sent to Affirma and their results were Benign, so my radiologist amended her results to benign for all 4 nodules. One such molecular marker test is the Afirma gene expression classifier (GEC) test. I'm fearful this is a Hurthle Cell Lesion, and I do not like what I have read. I have slightly high blood pressure and slightly high cholesterol that are well controlled with meds. 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. This all new to me and I have a lot to learn. Long-Term Outcomes of Thyroid Nodule AFIRMA GEC Testing and Literature Review: An Institutional Experience. Fingers crossed they come back negative for cancer! For nodules determined to be GSC Suspicious or with a cytopathology diagnosis of Bethesda V or VI, physicians ordered XA by checking a box. Multiple nodules. Among the 22 with only a TP53 alteration, the first 16 consecutive nodules were included (7 nodules were Bethesda III and 9 nodules were Bethesda IV). 1. Follow-up of atypia and follicular lesions of undetermined significance in thyroid fine needle aspiration cytology. For those of you that had a thyroidectomy, how long did it take for you to realize that the medicine was or was not enough for you? Conclusion: Am I being reasonable? 2020 Sep;8(9):e1288. 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. Repeat Fine Needle Aspiration Cytology Refines the Selection of Thyroid Nodules for Afirma Gene Expression Classifier Testing. My Afirma test came back May 6 with what the company calls 40% "suspicious". Thyroid nodules are very common, occurring in up to 50% of individuals. 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!) The Afirma test results came back Benign on left side and Suspicious 40% on the right side . Awaiting pathology. Results: The https:// ensures that you are connecting to the 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. Thyroid cancer is found in ~5% of thyroid nodules, so the vast majority are benign (noncancerous). Thyroid nodules are commonly found on ultrasound of the neck and the evaluation of a thyroid nodule may include thyroid biopsy. I'm now 3 days post op and other than some difficulty swallowing and talking loud, I'm feeling great. All thyroid nodules with a "suspicious" Afirma GEC result were investigated. I am hesitant to go to surgery with the 30% cancer chance without more information. Multiple nodules. A publication of the American Thyroid Association, Suspicious readings of the Afirma gene-expression classifier include some noninvasive encapsulated follicular variant of papillary thyroid carcinomas. Silaghi CA, Lozovanu V, Georgescu CE, Georgescu RD, Susman S, Nsui BA, Dobrean A, Silaghi H. Front Endocrinol (Lausanne). My radiologist determined that the smallest one had follicular cancer cells in her description but called it indetermined. Nevertheless, I am reluctant to just proceed particularly for the following reasons: Thank you. 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. No one was telling me that. It mentions possible microcalcification, which has never come up before. Afirma GEC or GSC a gene-expression classifier that identifies biopsies as "benign" or "suspicious," and mir-THYtype an mRNA-based classifier test. I wasn't one to resist. 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. I had a lobectomy sep. 30th. I've been battling hypothyroidism and suspicious thyroid nodules for 4 years. Can you expand on this? 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? Please, I am looking for any and all thoughts. 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. Follicular and hurthle cells are normal cells found in the thyroid. First off, I understand about 25% of suspicious actually turn out to be cancer (not that I should just "roll the dice") But still my labs are all within normal range. I didn't want to live with the risk, especially already being hypo and having nodules on the other side slowly growing. How could it be Benign on one side and Suspicious on the other ? The GSC correctly identified 41 of 45 malignant samples as suspicious, yielding a sensitivity of 91.1%, and 99 of 145 . Baca SC, Wong KS, Strickland KC, Heller HT, Kim MI, Barletta JA, Cibas ES, Krane JF, Marqusee E, Angell TE. So frustrating!! -Afirma Test: "Suspicious for Malignancy" - NEGATIVE for BRAF, MTC, RET/PTC1 and RET/PTC3 Bugs me. Still, I can see my nodule on one side and don't want to risk having cancer in my body, so I was ready to set up the surgery as soon as possible. I had a biopsy for 4 nodules 2 mos ago. Genes hold the information to build and maintain an organisms cells and pass genetic traits to offspring. Negative for BRAF, RET/ptc1 and ptc3 doi: 10.1002/mgg3.1288. malignant - The chance of cancer is very high >99% malignancy, surgery is necessary. I asked her if I have permission to email and post these articles and she said yes,they are for the public. Molecular Markers: genes and microRNAs that are expressed in benign or cancerous cells. A woman on the excellent health site Medhelp told me she had a 3cm. I am so glad to find this as reading everyone's story helps me feel not so aloneTHANK YOU! BACKGROUND Have lots of decisions to make and just trying to do some homework. I've swallowed the I-131 pill, what are negative effects in the long run? Accessibility 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. The Afirma gene sequencing classifier (GSC) performs better in indeterminate thyroid nodules than the Afirma gene expression classifier (GEC) BACKGROUND Thyroid nodules are very common, occurring in up to 50% of individuals. 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! 42 year old female. Seeking a second opinion I went to a leading hospital. For some reason, my long time best friend is one of the least supportive in all of this. Upenn top thyroid pathologists including Dr.Virginia Lavosi report that follicular neoplasms with oncocytic (hurthle cells)often are misclassified as suspicious by the Afirma test! At the end of the day, it is what it is now that I SWALLOWED (no pun intended) the I-131 pill, hopefully it won't work against me. Federal government websites often end in .gov or .mil. Here is what the Affirma test disclaimer said: Benign: Preformance characteristics not defined for nodules less than 1 cm diameter. 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. Afirma was suspicious. Thyroid nodule biopsies are used to identify if a nodule is cancerous or determine the risk that a thyroid nodule may be cancerous. All my blood tests and tsh levels are in the normal range. This site needs JavaScript to work properly. 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. But, I am concerned about the report I just received. -Lymph Node US: Mostly clear in neck, 1 ovoid focus in submandibular region that may be enlarged LN or Submandibular Lesion http://www.thyroidboards.com/showthread.php? 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. I didn't take the nodule too seriously, but did see a specialist and also got the FNA. The Afirma GSC is a cancer rule-out test with a high negative predictive value so that cytologically indeterminate (Bethesda III/IV)2thyroid nodules with an Afirma GSC benign result can be considered for clinical observation in lieu of diagnostic surgical resection (Fig. Used for FNA indeterminate nodules (bethesda III-IV). eCollection 2021 Nov 1. In early September, at a well-woman visit, my primary care doctor found a lump in my neck and sent me for a sonogram that found three nodules -- one estimated at 3.5 cm, one at 1.5 cm and the third much smaller. WHAT ARE THE IMPLICATIONS OF THIS STUDY? Results came back 50% Suspicious for FN(Follicular Neoplasm) with positive HRAS c.18HRAS c.182A>G (Q61R) But, I'm also tired of living with the uncertainty and semi-annual nerve sessions after each ultrasound. There was no follow up in 13% of cases and 87% were resected (50% lobectomies and 50% total thyroidectomies). 85% were benign. Also difficult is the reaction from others. 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. These results do not change the risk of malignancy of the (ROM) of the Afirma GSC suspicious result." Personally, I think getting the AFIRMA test done is a good thing. I did not get to go under the knife for my TT til this past March. Thyroid Fine Needle Aspiration Biopsy (FNAB): a simple procedure that is done in the doctors office to determine if a thyroid nodule is benign (non-cancerous) or cancer. The third biopsy was sent for genetic testing which came back as suspicious. In such cases, testing of molecular markers related to thyroid cancer may help determine the risk of cancer. Advice needed please. Of the 343 nodules that underwent the GEC test, 178 cases (51.9%) were considered suspicious for cancer. 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 NODULES The oncogene molecular method misses cancers that do not express the oncogenes tested,but has the advantage of having a much lower rate of false positives as compared with the GEC method,assuming that "suspicious" is positive. ThyCa: Thyroid Cancer Survivors' Association, Inc. This did not surprise me since I had researched "suspicious." 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. Bethesda, MD 20894, Web Policies 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. Have lots of decisions to make and just trying to do some homework. The moment that I've been so nervous about finally came yesterday. 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. I had a total thyroidectomy in NYC. A. And she's just mostly silent about it. Patient medical records were retrospectively reviewed for clinical history, FNA results, radiologic findings, management and follow-up. Papillary thyroid carcinoma, Follicular Variant, 2.1 cm in greatest dimension, present in mid to lowe pole, woth prior FNA site changes. 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]). 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). Several thyroid nodules. Conversely, when evaluating nodules with suspicious molecular testing, surgical rates were 88% and 89%, respectively, for GEC and GSC (P = 0.853) . Is one easier to recover from ? The doctor uses a very thin needle to withdraw cells from the thyroid nodule. Thyroid Nodules: http://www.thyroid.org/thyroid-nodules/, Thyroid Cancer: http://www.thyroid.org/thyroid-cancer/, Thyroid Surgery: http://www.thyroid.org/thyroid-surgery/. Thyroid 29:11151124. But that's a personal issue I'll have to work out in time. A 36% Increase in Specificity With Afirma GSC Versus Older Test . My surgeon wants to operate right away stating that these kind of results have a 90% truancy for cancer to be present. I called back and left them a message that was at home, to call me back. 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. This process has helped me to realize that there is a lot that physicians do not understand--much more than I knew. Thoughts or experiences?? Thyroid Fine Needle Aspiration Biopsy (FNAB): Change In Thyroid Nodule Volume Calculator, Find an Endocrinology Thyroid Specialist, Clinical Thyroidology for the Public (CTFP). 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. Please let me know what you think. The .gov means its official. I am not afraid of the surgery, only would really be disapointed if a vital organ was removed from my body for nothing. So we decided to remove the right lobe a week after the afirma results. 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) . The cancer-associated genes important in thyroid cancer are BRAF, RET/PTC and RAS. Thyroid Nodules: https://www.thyroid.org/thyroid-nodules/. The . So the jump from that mentality to that of, "oh, I can get cancer, too" has big a huge one for me. What should I know? -Male - Slightly Hypothyroid which began over the past year or so 1). Afirma; FNA; cytology; thyroid nodules. And at that appointment, she told me she was about to go on maternity leave, and wanted me to have surgery before her leave. He recently called me back and said that my criticism of the test is valid. This large study demonstrates that almost one-half of Bethesda III/IV Afirma GSC suspicious and most Bethesda V/VI nodules had at least 1 genomic variant or fusion identified, which may optimize personalized treatment decisions. I don't trust this new Afirma thyroid test for very good reasons. Mol Genet Genomic Med. 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. undefined will no longer be visible to you including posts, replies, and photos. Rationale: Crosswalk to 81545 ($3,600) 81545 describes the original Afirma classifier; when . I was told to monitor my nodules every couple years using ultra-sound and if they increased in size, they needed to have FNA done. 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. He tried to console me but he was also upset. I have since found several more women who had false Afirma test results and had surgery and their nodules were also benign! Indeterminate thyroid nodules in the era of molecular genomics. They incidentally found a nodule on my right thyroid tru CTSCAN in Dec.2014. What do I do? Epub 2017 Feb 2. Thyroid cancer support group and discussion community. I'm a lumpy person, I told my husband. Are you sure you want to block this member? Hello, new here and confused, anxious and a bit worried. Thanks again, Ok so this is all brand new to me so please bear with me. 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? I had three biopsies on a completely solid 2.0cm nodule, all which came back indeterminate/AUS. -No Size changes of Nodule in last 2-3 months (duration of time to get all of these tests) They call follicular neoplasms with hurthle cells FNOF. One has tested benign on several FNAs, is cystic, and has remained consistent in size. The site is secure. 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 . I was seen by a thryoid surgeon who did a 1st biopsy with w/ " suspicious of FVPTC". 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. Endo M et al 2019 Afirma Gene Sequencing Classifier compared with Gene Expression Classifier in indeterminate thyroid nodules. 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 want to jump the gun, and will wait to hear what the new doctor says. Also is anybody here familiar with "Afirma Thyroid Analysis" Right now my neck lymph nodes look good. Surgical margins: negative for tumor (tumor is < 0.1cm from margin) If benign = no surgery, IF suspicious or malignant = surgery. Ultrasound reports unfortunately not very informative other than size. 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. Cancer cells frequently have mutations in these genes. Cytopathol. The Afirma GSC is a next-generation genomic test that relies on RNA sequencing and advanced machine learning methodology to categorize tissue from cytologically indeterminate FNA biopsy as either benign or suspicious.2 Wong KS et al. Thanks so much! As I have learned on this board, just 'taking a pill' for the rest of your life isn't as easy as it sounds. The Afirma gene expression classifier (GEC) is being increasingly utilized to confirm the benign nature of indeterminate FNA cytology results thus avoiding unnecessary surgical procedures. I am wondering if anybody can comment on whether my case described below is considered to be reclassified according to the recently released guidelines. An important limitation of this study is that the authors did not examine the rate of noninvasive follicular variant papillary thyroid cancer in specimens that were not reported as suspicious by the GEC test. A month ago I had the Afirma test and it came back positive - suspicious for cancer which increased my chance from 5% to 50%. Afirma result was suspicious in 69 cases. 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. The benign call rate for GSC was 76.2%. As said I have a lot of great important articles by many different endocrinologists written at different times for The American Thyroid Association's journal criticizing the Afirma test and how 48% (I'm sure it's much higher!) Her only information about this comes from me, as she lives across the country and can't go to doctor's visits with me. And she said her surgeon said that this test is not very reliable and that meanwhile she has a large bill from the company. 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! A thyroid nodule biopsy can be benign (normal), malignant (cancer) or indeterminate. She has other small nodules on her other thyroid lobe. the GSC is to further differentiate indeterminate FNA. Results: Afirma result was suspicious in 69 cases. WHAT ARE THE IMPLICATIONS OF THIS STUDY? So, if you were going to go down that route then this will save you from having a second biopsy. 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! He also said that what the Afirma pathologist and representatives told me that I have a 40% suspicious chance of thyroid cancer isn't true.He said it's about 25% still. I feel good for 55 and slid through menopause easily. Thanks for chiming in. Which if they used the YTD income they could clearly see that I qualified for a reduced billing. I'm also anxiously waiting my pathology results! 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! Epub 2020 Mar 17. Lastly I do 25mcg of levothyroxine once a day for Hypothyroidism, it was prescribed based on lab results, not on how I was feeling. Sometimes, thyroid biopsy specimens are indeterminate, meaning that thyroid cancer cannot be definitively ruled in or out. The Afirma Genomic Sequencing Classifier (GSC) provides physicians with a comprehensive solution for a complex landscape in thyroid cancer diagnosis and individualization of care. Method: 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 I hope this helps calm some fears for others who may be going through the same thing. 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:( eCollection 2021. It was found incidentally in an MRI I had for cervical spine pain. Of the 16 cases of follicular variant papillary thyroid cancer, 14 of them were noninvasive follicular variant of papillary thyroid cancer (88%). Sometimes you only hear the bad stories and not the good so I wanted to share mine. 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 rate of malignancy in nodules suspicious for neoplasm (SN) on cytology interpretation was 31.2% (5/16). 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. You cannot become a thyroid cancer specialist in 24 hours needless to say. Euphemia I just read your post about classifications changing. 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. Thus, 54 NIFTP cases were established, all with a suspicious Afirma GEC result. This test is performed by the company Veracyte Inc. BACKGROUND Thyroid nodules are very common, occurring in 30-50 % of patients. He said there was no lymph node involvement but there's no way to tell until final path. Abigail. https://www.inspire.com/groups/thyca-thyroid-cancer-survivors-association/discussion/need-advice-surgery-or-not-based-on-40-afirma-test/?page=2#replies.

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