# Indeterminate biopsy reslts...



## happyindallas (Mar 22, 2013)

Hello. This is my first post. I have been reading these boards for the past month and they have been very helpful. I recently got some good news, and what I hope is some valuable information to others out there, so I want to share my experience.

Long story short...a month ago my PCP found a lump in my throat. Next was the sonogram and then a FNA biopsy with indertiminate results. My PCP referred me to an endocronologist. *HERE IS WHERE IT GETS INTERESTING.* He performed another FNA but sent the results to a lab that performs RNA testing on the sample. There is no "Indeterminate" with this particular test. I am very thankful that the results were benign.

It was a very long and scary month. I did tons of reading on the internet and didn't find many other people who said they have had the RNA biopsy. I promised myself I would leave a post about it once I received my results.

My doctor said if this had happened to me even five years ago, I would have had to have surgery to determine if the nodule (3.6cm) was cancer. I am very thankful for this new technology and want to make sure others know it is available...be sure to ask your doctor about it!

Good luck to everyone!!


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## Octavia (Aug 1, 2011)

Hi, and welcome!

What is RNA testing? Do share!


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## happyindallas (Mar 22, 2013)

Try this link. The name of the company that processed my results is Veracyte. There is a good deal of information on the web if you research it. However, it is still a relatively new process, so that is something to always keep in mind.

http://thyroid.about.com/b/2012/07/...ate-half-of-unnecessary-thyroid-surgeries.htm


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## Andros (Aug 26, 2009)

happyindallas said:


> Hello. This is my first post. I have been reading these boards for the past month and they have been very helpful. I recently got some good news, and what I hope is some valuable information to others out there, so I want to share my experience.
> 
> Long story short...a month ago my PCP found a lump in my throat. Next was the sonogram and then a FNA biopsy with indertiminate results. My PCP referred me to an endocronologist. *HERE IS WHERE IT GETS INTERESTING.* He performed another FNA but sent the results to a lab that performs RNA testing on the sample. There is no "Indeterminate" with this particular test. I am very thankful that the results were benign.
> 
> ...


How nice of you to share this!! I am so glad you did not have to have unnecessary surgery!!


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## Andros (Aug 26, 2009)

For those that would like further info re RNA testing..................

http://www.thetrp.net/article.asp?i...me=10;issue=4;spage=22;epage=23;aulast=Mandel


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## donnakd (Apr 8, 2013)

My doc said the afirma test was a possibility since I've had 2 inconclusive FNAs, but there is a 30% false negative rate, and you still need to recheck with a sonogram and FNA in 6 months.


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## Andros (Aug 26, 2009)

donnakd said:


> My doc said the afirma test was a possibility since I've had 2 inconclusive FNAs, but there is a 30% false negative rate, and you still need to recheck with a sonogram and FNA in 6 months.


That is correct; follow-up on a regular basis is essential.

Thank you for keeping us on our toes here w/all of this stuff!


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## donnakd (Apr 8, 2013)

You're welcome, Andros. I had a hard time deciding to post it and wording. I didn't want to be taken as being negative. Just trying to share info!


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## Andros (Aug 26, 2009)

donnakd said:


> You're welcome, Andros. I had a hard time deciding to post it and wording. I didn't want to be taken as being negative. Just trying to share info!


And you did a wonderful job of it. If we withhold the truth (as we know it), we could inadvertently cause a patient great harm.

So for the most part, I believe it is best to pony up and speak frankly.


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## CindiG (May 9, 2013)

Where is the delete button on here? I just made a new post with a lot of the same information but with new important information,and I don't want two of almost the same posts twice!


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## abymom99 (Apr 15, 2013)

Thanks to all for this great input. I'm finding the road to thyroid cancer diagnosis to be very confusing and inconclusive. There are also stories of those with "benign" FNA's have sometimes had their nodule removed due to size/complications from it and later find out that there is cancer there. I've been doing a lot of researching my "benign" nodule, since I apparently have no endocrinologist involved in my care anymore , and found this article on solitary nodules to be very interesting:

Following a comprehensive medical history and thorough physical examination, fine-needle aspiration biopsy (FNAB) should be considered the initial step in the evaluation of the solitary thyroid nodule. Depending on the interpretation of the FNAB cytologic specimen, management consists of observation, levothyroxine suppression therapy, or surgery.​
And this goes on to say this about follow-up with benign solitary nodules:

Patients with benign solitary thyroid nodules may undergo observation or levothyroxine suppression therapy as the initial treatment modality. Levothyroxine is typically administered for 6-12 months to determine if the solitary thyroid nodule decreases in size. If the nodule decreases in size after treatment with levothyroxine, this medication is discontinued, with follow-up examination of the thyroid nodule in 3-6 months. However, if a benign solitary thyroid nodule increases in size, a repeat trial of levothyroxine and repeat FNAB may be indicated. Additionally, growth of a thyroid nodule during levothyroxine therapy is a strong indication for surgery.

No consensus exists regarding the degree of thyroid suppression or the efficacy of levothyroxine therapy. In fact, many endocrinologists no longer recommend thyroid suppression because of potential long-term adverse effects, such as osteoporosis and cardiac arrhythmias. Still others maintain a thyroid-stimulating hormone (TSH) level ranging from 0.1-0.3 mU/L rather than suppressing to the lowest limits of detectability to avoid immediate toxicity and long-term side effects.​
So it seems even if you have a benign biopsy, there is still risk of further growth, cellular changes and potentially cancer. And with my aunt having only one tiny mm spot of papillary cancer in her entire nodule, I can see why it would easily be missed with FNA. You'd think in this day and age they'd have a sure-fire way of testing for thyroid cancer!


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## CindiG (May 9, 2013)

abyymom99,

My *3* small thyroid nodules were found by accident because in October 2006,when I was 41 and a half I asked my internist to please give me a prescription for a thyroid ultrasound because I had always been thin and ate a lot of fattening foods,as much as I wanted and did no excercise. But at 34 I was overweight for the first time in my life and even when I was walking more,and only eating 2 low-fat meals a day. So my internist said that most people's metabolism slows down as they age,and she said I can't tell you how many patients I've had who were thin when they were younger and now they are overweight.

But my metabolism slowed down way too much,and all my thyroid blood tests were always normal all through the years. So I thought that the ultrasound could maybe give me some idea if my thyroid was somewhat off,not working totally normally. The technician told me that the thyroid ultrasound can't tell me how my thyroid is working,only if it's a normal size. I didn't know this of course,and my internist should have told me,and I wouldn't have had the test if I knew this.And I regret it hugely,because that's when this nightmare of constant worry and concern began!

My isthmus nodule that is mixed cystic and solid,(my right nodule is also,and my largest left somwhat over 1cm is almost all solid,and my former endo biopsied it twice in one day and it's really deep in my thyroid and even with the lidocaine needles,(which hurt like h*ll it felt like I was being bitten all over my neck,because he didn't numb my skin with anything the biopsy of this nodule hurt bad),and the other two just once,I was told by the radiologist at University of Penn Dr.Jill Langer that it increased 50% in 3 years. The last ultrasound I had was in May 2010 and I was told by Dr.Stephanie Fish who I only saw once there because soon after she left for the Sloan Kettering Cancer Center,told me in person and then wrote me a note saying that all 3 nodules were still stable in size and the left one increased slighly but not significantly and that she doesn't recommend re-biopsy at this time and that I could wait 2-3 years to come back for another ultrasound. So I did just this January and now the isthmus nodule is described as midly hypovascular and for the first 3 years of my ultrasounds at Penn none of them were.

The radiologist Dr.Jill Langer and the my new endo and the endo who just did my recent FNA said they don't go by blood flow in nodules as a suspicious feature anymore. But the isthmus nodule has always been the hypoechoic one,and since I found out I had the nodules I learned from a lot of great radiology and endocrinology sites,that thyroid nodules that are hypoechoic on ultrasound are more often cancer,but many benign nodules are also hypoechoic.Dr.Jill Langer told me in a 2009 email and on the phone 3 years ago,that markedly hypoechoic is considered a suspicious cancer feature,but I'm still finding studies online by radiologists and endocrinologists that list just hypoechoic,or just markedly hypoechoic or both.

I asked Dr.Langer 3 years ago if any of my nodules are taller than wide shape,and she said none of them are taller than wide,she said she was looking at my ultrasound film right then. Almost all thyroid cancers grow taller than wide,most benign nodules grow flat wider than tall. I also don't have any calcifications,at least not yet,although this is absent in many thyroid cancers especially small ones,but it's a very suspicious common ultrasound feature.

I asked several endocrinlogists including two recently one who is my new endo and the one who did my recent FNA and two pathologists the one who reviewed my recent FNA and the one who gave me a second opinion back in July 2008,all from University of Penn if benign thyroid nodules can turn cancerous,and they all said no,they usually don't and they don't believe in them turning into cancer.Thre different endos there said benign nodules grow too over time.

50-60% of people have thyroid nodules and 90-95% are benign so since they are so common if most or even many benign nodules turn cancerous,there would be a *much* higher rate of thyroid cancer than there is!

And I have been on about 6 thyroid and medical boards since the Fall of 2006 and I have read so many posts from people who had very large benign nodules that they would have had to unfortunately remove even if they had 100% proof that they were benign before they had their thyroids out because they were 3cm,4cm and some as big as eggs,but they still were benign even after growing that big!

So most benign nodules stay benign,but many will continue to grow really big over many years as long as they are in your thyroid. Others will grow to like 1cm and stop but maybe they will grow somewhat more over many many years.

And see the article on PubMed called,Natural History Of Benign Solid and Cystic Thyroid Nodules,and another article I found online some years ago, The Rate Of Tumor Growth Does Not Distinguish Between Malignant and Benign Thyroid Nodules by a whole bunch of Japanses Dr.'s and I'm not sure which is their last or first name but it says the study was done by a department of surgery Shinshu University School of Medicine.

And you can look up other studies and information on google or bing by searching for Most or Many Benign Nodules Grow.

And nobody was born with thyroid,nodules,uterine polyps,or cancers,so both benign growths and cancerous growths started off as nothing, they didn't exist so they had a size 0,and in order for a benign nodule or any benign growth to have a size of even 3,4,5 or 8mm or 1,2,3,or 4cm it had to have grown from nothing to get to that size. The same thing for cancerous growths. They are often both the same sizes,it's just a matter of if they were found earlier after only a few years,or 10 years or more later then both are often bigger when found.So size usually doesn't tell you anything.

Benign nodules just grow even slower usually then common slow growing thyroid cancers.But I've seen quite a few people on thyroid health boards over the last 6 and half years I've been on many,who had benign nodules grow in 6 months or a year,and some had papillary cancers that didn't grow for 6-8 years. Infact there are studies by endocrinologists online about that,that many small papillary thyroid cancers 1cm or smaller either never grew or grew after 8 years and they find in up to something like 20-30% of people's autopsies who either died of accidents,other diseases,or in their 80's tiny papillary thyroid cancers that never grew and didn't kill them and most never knew they had them.


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## Octavia (Aug 1, 2011)

CindiG said:


> abyymom99,
> 
> Also, my first cousin had only one nodule over ten years ago and Dr.Susan Mandel a top thyroid cancer specialist at university of Penn did her FNA and it came back unfortunately inderminate so she had half of her thyroid out,it turned out it was benign as 90-95% of thyroid nodules are,even many that are suspicious and inconclusive. Her best friend has two nodules and also had an inconclusive FNA many years ago at University of Penn,she then went to another top place in NY,and got another inconclusive result. She then went to Dr.Anthony Jennings(who did my first FNA of all three of my small nodules that came back benign in June 2008) and now her results were benign.
> 
> Tipper Gore the ex-wife of ex vice president Al Gore also had only one nodule with two inconclusive FNA's and had half of her thyroid out in 1999 and it was a benign follicular adenoma.


Cindi, I believe you're new here. Welcome! Please introduce yourself...


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## CindiG (May 9, 2013)

happyindallas said:


> Try this link. The name of the company that processed my results is Veracyte. There is a good deal of information on the web if you research it. However, it is still a relatively new process, so that is something to always keep in mind.
> 
> http://thyroid.about.com/b/2012/07/...ate-half-of-unnecessary-thyroid-surgeries.htm


I'm sorry for posting so much information at once! And I posted this elswhere on this board.

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 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 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.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.

He also says that out of 61 follicular neoplasms that were benign the Afirma test misclassified 31 of them as suspicious.

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.

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 your very site 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!

Last week 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 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,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!

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

I just found *another article written by a 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!

http://www.glandsurgery.org/article/view/1002/1193

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

:banghead:


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## CindiG (May 9, 2013)

I recently found this great information online it's all about detailed descriptions with images of common benign and cancerous ultrasound thyroid features. It's by radiologist Dr.Jill Langer from University of Penn. The last date of one of her references was from 2010. It says that taller than wide shape is more common with thyroid cancers under 10mm.

http://www.penncancer.org/pdf/LangerThyroidNodules.pdf


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