"Possible Follicular Neoplasm"

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"Possible Follicular Neoplasm"

by dinazulu on Thu Mar 26, 2015 02:56 PM

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I recently learned that I have a multinodular goiter.  A needle biopsy was performed on one nodule in particular.  The "suspicious" nodule.  My primary care physician read the results to me over the phone.  He said "the results are not showing cancer, but they are also not ruling out cancer."  I have an appointment Monday with an endocrinologist.

I have been thinking about this for a while now, as it has taken me a month to get in with the endocrinologist.  Now that the appointment is Monday, I am getting more anxious and nervous.  I called back to my primary care yesterday.  I said that I wanted the results explained to me again.  The nurse read my doctor's comments directly to me.  She said, "Explained to patient about negative resultsbut possibility of follicular neoplasm."  He could have very well said that to me on the phone the first time, but I don't remember. 

As I understand it, a neoplasm is just any growth of abnormal cells.  So I don't know if there is a possibility of follicular cancer?  Or follicular neoplasms?  I am confused.  I should also note that I have a history of childhood radiation therapy for Hodgkins Disease.

So of course, I started to do some research.  It seems that I need to prepare myself for the fact that it is very likely that the endocrinologist will want to surgically remove the nodule, or even the entire thyroid!  Does this sound right?  What do you think?  I went from thinking nothing was wrong to now thinking my thyroid is getting removed and I might have cancer again.  I need some advice, clarification, insight, help.

RE: "Possible Follicular Neoplasm"

by butterfly501 on Thu Mar 26, 2015 07:26 PM

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It is because the nodule is follicular that there will be concern that it may be cancer.  Follicular nodules are notorious for giving Indeterminate results after FNA. 

You can ask about Veracyte Afirma (genomic testing of FNA sample).

Your doctor may suggest to watch and wait.

Your doctor may suggest a partial thyroidectomy to remove the lobe with the nodule.

Ultimately, removing the lobe with the nodule is the definite way to know if the nodule is cancerous or not.  But there is a lot of information out there to help determine if lobe removal is necessary. 

Most likely the nodule is not cancer.  But if it is, thyroid cancer (even follicular) is generally very treatable and survivable. 

RE: "Possible Follicular Neoplasm"

by dinazulu on Thu Mar 26, 2015 08:00 PM

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Thank you for your response.  I have not come across anything about genomic testing.  That is something that I will ask about. 

I am not opposed to a partial thyroidectomy.  I never want to have cancer in my body again.  I was just wondering if the next step was going directly to surgery, or if there was something else that could be done to see if it was cancer first.  I like to prepare myself for these types of appointments where decisions need to be made.  I feel like I was given very little guidance and any information I have obtained is through my own research and diligence.

Thank you for saying that it is likely not cancer.  And reminding me that even if it is, it is treatable.

I am 30 years old.  I am planning a wedding.  I am looking forward to a long healthy life.  I do not want anything to interrupt that.

RE: "Possible Follicular Neoplasm"

by butterfly501 on Thu Mar 26, 2015 08:43 PM

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You'll have time to research your best plan of action.  It's not the kind of thing doctors usually light a fire under. 

It sounds like your doctor is under the assumption the term "follicular neoplasm" is going to mean something to you.  If what you described is as much as your doctor told you, you were given zero guidance. 

Good luck to you!

RE: "Possible Follicular Neoplasm"

by Randie on Sat May 16, 2015 04:57 PM

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On Mar 26, 2015 7:26 PM butterfly501 wrote:

It is because the nodule is follicular that there will be concern that it may be cancer.  Follicular nodules are notorious for giving Indeterminate results after FNA. 

You can ask about Veracyte Afirma (genomic testing of FNA sample).

Your doctor may suggest to watch and wait.

Your doctor may suggest a partial thyroidectomy to remove the lobe with the nodule.

Ultimately, removing the lobe with the nodule is the definite way to know if the nodule is cancerous or not.  But there is a lot of information out there to help determine if lobe removal is necessary. 

Most likely the nodule is not cancer.  But if it is, thyroid cancer (even follicular) is generally very treatable and survivable. 

I  posted this on other thyroid forums two years ago.

I don't trust this new Afirma thyroid test for very good reasons. My Afirma test came back May 6 with what the company calls 40% "suspicious".


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!) Dr.Jerome " target="_blank" rel="nofollow">Dr.Jerome Hershman.

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 " target="_blank" rel="nofollow">Dr.Jerome Hershman says,


Currently the Veracyte Affirma GEC method "retails" for 3,350 plus 300 for cytopathology. 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. 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. 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. This approach is being marked by several laborartories and was reviewed in the December 2011 issue of Clinical Thyroidology. 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.


Dr.Hershm an 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.
He also says that out of 61 follicular neoplasms that were benign the Afirma test misclassified 31 of them as suspicious. He recently called me back and said that my criticism of the test is valid.


May 7 endocrinologist Dr.Bryan Mclver,one of the authors of the article from September 2012 in The American Thyroid Association's Journal called,An Independent Study Of A Gene Expression Classifier(Afirma) In The Evaluation Of Cytologically Indeterminate Thyroid Nodules Initial Report and he used to work at The Mayo Clinic,(he now works at The Moffit Cancer Center called me back. And he said he doesn't think the Afirma test is as accurate as they say. 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 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. He recently emailed me back and said,as we discusssed on the phone,he agrees with many of my concerns about the Afirma test.


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 have since found several more women who had false Afirma test results and had surgery and their nodules were also benign!


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". Well her Afirma test result was benign,but not long after she had her thyroid removed and found she had papillary cancer that had spread into her central lymph node and she said that her surgeon told her that the Afirma test is not very reliable!


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!) they misclassify benign nodules as suspicious!

In May 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. I asked her if I have permission to email and post these articles and she said yes,they are for the public.


A woman on the excellent health site Medhelp told me she had a 3cm. 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! She has other small nodules on her other thyroid lobe.
I also read on this Inspire site in their Thyroid Cancer Survivors Association forum,a woman had a 2cm indterminate nodule that everyone was concerned about and her Afirma test came out suspicious or still indeterminate,and she had her thyroid removed,it turns out that the 2cm nodule was benign but they found tiny papillary cancers all under 5mm that weren't even seen on the ultrasound! 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!


On May 8th endocrinologist Dr.Steven P.Hadak who with Dr. David S. Rosenthal co-authored one of these studies for The American Thyroid Association's Clinical Affairs Committee called,Information For Clinician's:Commercially Available Molecular Diagnosis Testing In The Evaluation Of Thyroid Nodule Fine-Needle Aspiration Specimens called me back and was very nice,he even had a patient waiting! He said this Afirma test is wrong half the time misclassifying benign nodules as suspicious,(I'm sure it's even more than half!) and I said this is not a good test,and he said I don't think it's a good test either!


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!

[url=http://www.thyroidboards.com /showthread.php?t=5283]http://www.thyroidboards.com /showthread.php?t=5283[/url]



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!
Biotech Strategy Blog in this post by Pieter Droppert June 28,2012 Also mentions 48% of nodules falsely called "suspicious" for cancer and can cause many people to have unnecessary thyroid surgery when they don't have cancerous thyroid cells!
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!

I really hope that a much better,much more accurate reliable test like this will be created!

:banghead:


RE: "Possible Follicular Neoplasm"

by butterfly501 on Sun May 17, 2015 10:22 PM

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Afirma doesn't claim 100% accuracy.

RE: "Possible Follicular Neoplasm"

by Randie on Wed Jun 03, 2015 07:37 PM

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Not claiming a 100 % accuracy is very different from this test misclassifying benign nodules as being 40% or 80% as in what happened to that woman ''suspicious'' for cancer at least 48% of the time! And like I said I'm sure it's really higher than this.

Here are more cases in which the Afirma test falsely misclassified benign nodules as suspicious for cancer and in one of these discussions a one of the women's who had her benign thyroid nodule out that was called 40% suspicious by the Afirma test,said that her endocrinologist and his co-workers no longer use the test and that in their experience the suspicious category is worthless and is the same as the % in a random population.

RE: "Possible Follicular Neoplasm"

by Randie on Wed Jun 03, 2015 07:49 PM

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And a woman says in one of the links I posted above from the Inspire site,that her oncologist had two patients that the Afirma test had wrongly called their nodules suspicious that turned out to be benign and she said that her doctor was questioning whether she should even use the test anymore.The woman who posted about this did turn out to have thyroid cancer though.

At the time she posted this last year she was 69 years old and had a hurthle cell neoplasm that trippled in sixe in just 10 months!

RE: "Possible Follicular Neoplasm"

by butterfly501 on Wed Jun 17, 2015 04:58 AM

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Who cares what some person on inspire claims.

Afirma Veracyte exists and people who want to should ask their doctor about it.

RE: "Possible Follicular Neoplasm"

by Randie on Thu Jun 01, 2017 03:09 PM

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butterfly501,

Your response wasn't nice and was rude I care and many other people care that the Afirma test was wrong in many people's cases,and there are many studies showing the inaccurary of this test as I posted about and that in at least 48% (I'm sure it's really higher from the many people I have found who this happened to) of cases where the Afirma test came back 40% ''suspicious'' and the nodules were actually benign when surgically removed.There have has been a smaller % of people who had the benign nodule result only to find they actually had thyroid cancer that spread to their lymph nodes.

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