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I Had A Benign FNA In June 2008 Of My 3 Small Thyroid Nodules Now 1 Grew 50% Had Indeterminate Follicular Neoplasm With Oncocyti

mhc4165
Posts: 46
Joined: Dec 2008


 On May 6 I got  a call from Dr.Caroline Kim at University of Penn who did my FNA on April 18 and she told me my 1.cm which I thought was only 8mm and had grown 50% in size in almost 3 years,is mixed cystic and solidmy right lobe nodule is also mixed cystic and solid and my largest left nodule somewhat over 1cm is almost entirely solid), now mildly hypervascular( all of my nodules were non-hypervascular before until my January 24 ultrasound),has always been hypoechoic,and it has a majority of Hurthle cells,came from the Afirma test in the 40% suspicious category! DR.Kim says it's could be 60% not cancer and I asked her if this nodule isn't considered suspicious on the FNA and she said no,it's still indeterminanate for cancer.I had an FNA in June 2008 by Dr.Anthony Jennings who isn't at university of Penn,and he unfortunately combined the samples of my right and isthmus nodule in 1 container and Dr.Kim said it's not a good wat to do this because we don't know if the hurthle cells came mostly from the isthmus nodule,and follicular and hurthle cell cancers can't be diagnosed on an FNA.He sent it to Quest diognostics and all the pathologist there said,was unremarkable follicular cells and colloid nodules.
 

 

So I was still worried and sent my slides for a second opinion to a top university of Penn pathologist Dr.Zubair Baloch. He wrote a short note to my endocrinologist and said that the right nodule,(which he didn't know was my isthmus and right combined)shows oncocytic(hurthle cell) cels and few lymphocytes percolating among the follicular groups suggesting an element of chronic lymphocytic thyroiditis. He said his diagnoses are hyperplastic/ademomatoid nodule with oncocytic change.Focal chronic lymphocytic thyroiditis,and left lobe hyperplastic/adenomatoid nodule.
 
 All of my thyroid blood tests have always been totally normal too.

 

When Dr.Kim gave me an ultrasound right before my recent FNA she said my nodule is the same size and it hasn't grown,I said well it's only been 3 months,she said well it's not growing fast.So today on the phone I rememinded her that she said that,and I now said well if it was an aggressive type of thyroid cancer it would be growig fast,and I said this nodule could have grown in 2-2 and a half years not 6 months because I had never waited more than a year to get a thyroid ultrasound for 3 years in a row at Penn. Dr.Kim said I don't know I've seen all types of cancers,Dr.Lupo does that mean I  could still have an aggressive type like Hurthle cell and it could grow slowly? I thought that more aggressive types grow faster than the most common slower growing like papillary and follicular.
 

 

Anyway,I don't know what to do now,a woman on here 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 more than 40% suspicious so she had half her thyroid out and this nodule was benign! I also read on the great site Inspire on their Thyroid Cancer Association forum,a woman had a 2cm inderminate nodule that everyone was concerned about and her Afirma test came out susicious,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! I'm beyond pettrified of any surgery,I haven't even removed my 2 uterine polyps found in August 2011 on a saline ultrasound,,even though I have been spotting in between my period off and on for 7 years now, and even though my own mother died of stage 4 of a rare aggressive type of endometrial cancer at age 49, because I haven't found anyone who will do it using an epidural as my cardiologist suggested and I communicated with many other women who have had it done this way including a woman at THe American Institute of Radiology and Medicine,she used to be an ultrasound tech herself,when I spoke to her two years ago she was 62,but in her 40's she had vaginal bleeding and had a uterine polyp removed with an epidural and not a D&C,but a hysterocsopy.
 
I also haven't had a colonoscopy even though I have bad pain in my bowel in the left side off and and on for 19 years now,and two gastrointerologists have suggested that I have a colonoscopybut they both think it's some type of irritable bowel condition,because I have an extreme terror of being put even into the twilight sleep for both of these procedures. So there is just *NO WAY* that I can have my throat slit open,a tube put down my throat and have general anesthesia!!!! So now what can I do?

 

mhc4165
Posts: 46
Joined: Dec 2008

 

I'm sorry for posting so much information at once!

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 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! 
 
About two weeks ago  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 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 recently 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
 
 
 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 really hope that a much better,much more accurate reliable test like this will be created!
 
 
  :banghead:

mhc4165
Posts: 46
Joined: Dec 2008

 

 

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 somewhat 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.Also I was told that my isthmus nodule that grew is now 1cm.

 

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.

 

 

 

mhc4165
Posts: 46
Joined: Dec 2008
 
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.

 
mhc4165
Posts: 46
Joined: Dec 2008
 
Also, my first cousin had only one nodule over ten years ago and Dr. Susan Mandel a top thyroid cancer specialist 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 only one thyroid nodule was found by accident when she had an MRI because she was taking diet pills because she had gained weight after her second baby,and she wasn't sure if that's what was causing them.Her nodule was also cold on the thyroid scan.
 
 
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.
 
 
I just 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.

 

 
mhc4165
Posts: 46
Joined: Dec 2008

How depressing and disappointing that I am the only one replying again to my posts,I was *really* hoping that some other members would have responded by now!

Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

I'm sorry you feel ignored.

As far as I can tell you know more about this than anyone else on this web site.  I'm not sure what you want us to say, we can't tell you you're cancer free.  Not even your doctors can tell you that without removing your thyroid.

I realize you're scared.  For me, not knowing was worse than finding out I had thyroid cancer.

I feel for you and I hope you're cancer free.

Alan

mhc4165
Posts: 46
Joined: Dec 2008

Thank you very much for your nice response Alan! But I would be much better off getting a definite FNA diagnoses,obviously benign like in 2008,but even papillary cancer,than this terrible no win situation I'm in! If I got a definite thyroid cancer diagnoses,then I would be forced to have my thyroid removed!

 

Here is a link to a January 2013 PubMed article  called, Oncocytic Follicular Nodules Of The Thyroid With Or Without Chronic Lymphocytic Thyroiditis:An Institutional Experience by many doctors all at University of Penn and two of them  are top thyroid cytopathologists I sopke to,DR.Virgina Livolsi and Dr.Zubair Baloch who both called me back. Dr.Baloch gave me my second opinion on my then benign FNA results of all 3 of my thyroid nodules in July 2008 a month after another endo who isn't at university of Penn,did my first FNA . And they found that 79% of these follicular neoplasms with oncocytic features,after surgical follow up out of 269 cases,were benign.

 

 

mhc4165
Posts: 46
Joined: Dec 2008

 

Also, I recently got a call back from endocrinologist of 50 years Dr.Jerome Hershman who wrote one of several different articles written by different endocrinologists  in The American Thyroid Asscociation's journal pointing out how the Afirma test wrongly misclassifies at least half of benign nodules as "suspicious" and he said my criticisms are valid! He said I should tell the Veracyte company my concerns,yeah like that is going to do anything!

 

I also recently got an email back from thyroid cancer specialist endocrinologist Dr.Bryan McIver who used to work at The Mayo Clinic when he co-authored a study in The American Thyroid Association's journal also pointing out the inaccuracies and unreliabilities of the Afirma test. He called me back in May and he now works at the Moffit Cancer Center.He said in his recent email to me,that as we discusssed on the phone,he agrees with many of my concerns about the Afirma test.He thanked me for my note. I wrote him about additional people I found who had false suspicious Afirma test results including that poor woman on thyroidboards.com who was given a false 80% suspicious Afirma result and because of this her endocrinologist told her to expect thyroid cancer and that it was more than 80% likely she had it,but after her thyroid was unnecessarily removed she found her nodule was benign. I also told Dr.McIver about the online article by endocrine surgeon Dr.Sam Wiseman and an article by Pieter Droppert on his Biotech Stragety Blog where they all point out the same things about the Afirma test wrongly calling half (I'm sure it's more from all of the people I've found it happened to) of benign nodules "suspicious".

 

 

 I told a woman in customer service recently(I had to find out if they accept my insurance,because they recently sent me a pamphlet about this) about all of these Dr.'s studies pointing out this about the Afirma test,and she was surprised and interested. She said these are published studies by Dr.'s,I said yes,and she said can you send them to me,so I did.She also said I'm misunderstanding what the test does,it doesn't mean I have cancer and she said something like it's better at classifying cancerous nodules than benign ones,which is really confusing and just doesn't make much sense,since it inaccurately classifies at least 48% of benign nodules as "suspicious" for cancer!

 

It's not going to make any difference to the Veracyte company though,because they are in a business making money and they just want to promote their company and it's product!
mhc4165
Posts: 46
Joined: Dec 2008
Here is a recent article Thyroid Cancer-Treat It Or Leave It?
 
 
 
Baldy's picture
Baldy
Posts: 225
Joined: Mar 2011

I hope your doctors have explained that a Fine Needle Aspiration (FNA) is hit or miss.  The diameter of the needle is tiny and even if there was a malignant tumor present, there's a good chance an FNA won't find it.  Having the FNA guided by ultrasound is better, but there's still a good chance it could give you a false negative.  The only way to be sure is to have a total thyroidectomy.  I'm NOT telling you you should do this, from what you've read and related to us here, it sounds like the odds are good your nodules are benign.  The question you have to answer is do you wish to play the odds where your health is concerned.  On the other hand, if it's not broken don't fix it.  Both are apropriate in your case.

===

In an earlier thread, I commented on an article I read on line that may also provide you with information to make your decision.  Unfortunately I didn't provide a link, but here is what I wrote ...

"I just read an article on the New York Times web-site in which some doctors are questioning if there is a true raise in the incidence of Papillary Thyroid Cancer.  They say in most cases, the raise can be attributed to better diagnostic procedures that find very small tumors that were undetectable before.  Some doctors think that these tumors, if left untreated, would not develope into a life threatening problem.  They go so far as to say the mortality rate from surgical complications probably exceeds the mortality rate if the cancer is left untreated."

===

If you wish to know what I would so in your position, I'm not sure.  For arguments sake, let's say I've already been diagnosed with some cancer other than thyroid cancer, I would probably opt for a total thyroidectomy.  Again, for arguments sake, let's say I have no previous cancer diagnosis, I would probably take the wait and see approach.  Doing biannual sonograms or whatever my doctors recommend.  The difference between the two being after my cancer diagnosis, I will no longer "play the odds" with my health.  Of course, if my doctors strongly recommended against surgery, I would follow their advise, which is what I'm doing now.  I have two lymph nodes in my neck that showed as suspicious on my last sonogram and I'm now waiting for the results of my next sonogram which will be later this month.  If it had been totally up to me, I would have had them removed, but both my endocrinologist and more importantly my surgeon strongly recommended I wait.

Alan

mhc4165
Posts: 46
Joined: Dec 2008

Alan thank you again for your nice response. But the problem is that some small papillary thyroid cancers can be just as aggressive as the more rare types of thyroid cancers,they can spread into lymph nodes,breast tissue,joints,and even lungs as happened sadly to quite a few people on here and other thyroid health and thyroid cancer boards. And doctors can't predict a lot of the time which ones will behave this way and which ones won't. Also,if someone has follicular thyroid cancer,or the more rare types like medullary or hurthle cell cancers,they will kill people if they go untreated. But the only thyroid cancer that is widely reported to have significantly increased is papillary especially small ones,but even larger sizes. They are not finding an increase in medullary,follicular and Hurthle cell thyroid cancers.

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