Questions about Thyroid Hurthel Cells

Hello. My name is Julie and I live in Atlanta. I received my FNA results today and they were indeterminate. They said I could have a Hurthel Cell adenoma or Hurthel Cell Neoplasm. I am very confused and do not know what to do. The Endo said I could:
1. TT
2. Lobectomy
3. Wait 6 weeks and do the conclusive genetic test
4. Get a second opinion

My questions are:
1. Does the genetic nodule test work on Hurthel cells?
2. Where is the absolute BEST place to go for this? Most knowledgable and best surgeons that take care not to destroy nerves or parathyroids? I read Johns-Hopkins, Mayo, Cleveland Clinic, Sloan-Kettering, or MD Anderson. But, I will travel anywhere to get this taken care of.
3. Does robotic surgery work on this> My nodule is 2.4 centimeters and I am in my 40's.
4. What about radio-frequency ablation?
5. Can these be benign? My endo said 85% chance it is still benign, but after researching, I am terrified out of my mind.
6. If I have to go on Synthroid, is it as awful as everyone makes it out to be? The people I know that are on it feel great. And Sofia Vergara and Brooke Burke seem to be doing fine, but the comments are so awful and it is scary.

I would really appreciate positive advice. I want to be healthy and to live a long, normal life. I have an amazing husband and two young children who need me and I need my family. I am praying for encouragement and hope that I'm going to be okay. I have never been ill and want to move on with my happy life.

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Hi Julianne,

My pathology report post TT was Hurthle cell Thyca. I had bilateral nodules of significant size. One was cancerous, the other showing change. All very confusing initially. Have come a long way from FNA, TT, LID, RAI, labs, body scan, Synthroid, BUT, I'M DOING WELL!

Remember if you choose TT, pathology may turn out to be benign adenoma & not cancer so try not to project to far down the road.

I couldn't sleep after sending the friend request last nite, so decided to include a bit of my history.

Hope to connect with you soon.

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Hi Kathleen. Nice to meet you. What size were your nodules? Mine is 2.4 cm.

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Hello and sorry to jump in.. Glad to have found some discussion about hurthle cells.
I have been diagnosed with hurthle cells too.
After suffering from thyroiditis back in June a few nodules were found. One was aspirated and hurthle cells were found. That nodule has since disappeared but another, which was aspirated a month ago also showed hurthle cells.
I am waiting for a TT , which will hopefully happen before the end of October.

I am finding it difficult to find I formation about hurthle cells.
From what I have read there is some evidence that whether a cassette of adenoma or a case of carcinoma, it's best to take thyroid away as cells can turn cancerous in future.

One thing I would like to know is how quickly hurthle cell carcinoma spreads. I am now worried that I still have my thyroid 4 months after hurthle cells were found.

I also read that iodine treatment is not particularly successful in hurthle cells cancers. So what is used as follow up to surgery to detect left over cells?

Do you know/remember how quickly nodules with hurthle cells grow?

On one of my scans calcification and intra/internodularity (sp?) was found . Does not sound good but I hope it's not a bad sign.

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Good morning!

Right lobe: 2.4 cm, left: 2.3 cm. Malignancy was described as minimally invasive, no spread to lymph nodes checked. Apparently even tho they were of significant size, the ca was caught early. Because of my age & a more potentially aggressive variant, my endo & nuclear med doc recommended a fairly high dose of RAI which I tolerated well.

My surgeon (ENT) was very experienced with TT; he does about three a week. Just ask @ consult, along with the thousand other questions. I found there were many questions generated on this site so as I read various posts I wrote down any ??? that came to mind.
You are fortunate to have found this MSG board early as the folks have vast & varied experiences. Just remember that as individuals, everyone has their own story, coping strategies, & thoughts on all topics. Take what you want & leave the rest.

MedScape website has good article on Hurthle Cell Carcinoma you may find helpful. Also a blog by Steve Shultz is great. Find it @ mslwc.blogspot.com or search "My short life with cancer". He is a Hurthle cell Thyca patient & writes an excellent narrative of his journey as well as offering numerous links.

Re: question about genetic nodule testing, are you referring to Veracyte Afirma Thyroid FNA Analysis? I checked it out & do have an opinion about it. Will talk to you about it if you would like.

Best to you!

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Welcome Lulla,

Wrote a response to you but inadvertently deleted it. Tells you how techie savvy I am. Will send another response later. Sorry!

Kathleen

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Thanks ! No worries . Just glad someone is talking about hurthle cells. :-)

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Yes, Affirma. I hope the Shultz article is uplifting. The title sounds awful :(

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I wish I hadn't looked at that blog. So depressed now.

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My advice to anyone scares is do NOT read that blog. For one thing he gives the worst statistics, when most doctors say if caught early is almost 100%.

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Julie,

My humble apologies re: Steve's blog & I do agree about his choice of title.

Kathleen

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Knowledge is Power, the more you know, good and bad, the better prepared you will be, sure it is scary, cancer is scary, but to over come a problem you first must know the problem you face. Turning a blind eye to the bad bits i think is just plain fool hardy.

http://emedicine.medscape.com/article/279462-overview

http://www.mayoclinic.com/health/hurthle-cell-cancer/DS00660

http://www.eurekalert.org/pub_releases/2013-02/mscc-dst021313.php

hope these web sites help you learn more about hurthle cell cancer

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I agree one needs to be informed. Thank you for the links. I thought I had read all the medscape info but I had not.

What I would really like to know is how quickly one should have surgery after hurthle cells are identified.
It has now been 4 months since mine were found and hopefully I will get my TT by the end of this month. But given all I know now about HC s why was my thyroid not whipped out immediately? Surely that helps prevent spread?
My nodule has absence of colloid and intra and internodularity which seems to be a sign of cancer

I have not come across anyone who has had hurthle cells that are not malignant.

Getting panicky now.

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I go for my surgery Monday. Mine is a 7cm Hurthle cell....something. I guess once pathology comes back I will have a true label for this thing growing in me. Keep me in your prayers! I cant wait to get on with life!

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Had my surgery on Wednesday. Should get the istogical results in 3 weeks. Surgery is not bad at all. Try let me out the next day. Although I had the video guided op - minimally invasive .
Good luck for the surgery.

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I had my surgery Tuesday, a lobectomy. Initial pathology during surgery showed no malignancy. Final pathology comes Tuesday. Surgeon feels good about it. He says he thinks we are done with surgery and that it should be cured! Thank God!!!
I pray so and praying for all of you!!!
I'm sore, but MUCH better four days post-op. the worst thing is not being able to shout or sing yet, but I was able to talk immediately in recovery, so there is no permanent damage. Parathyroid a are good too!
The doctor say to give myself 6-8 weeks for full vocal recovery and not to be so impatient with myself. General anesthesia sucks and leaves you tired and dizzy for a couple of days...still tired, but walking around the block three times per day.
It's been four days and I just want normality again! :)

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Julianne,
So glad your surgery is behind you. Sounds like you are doing pretty well for only being four days post op! Also good to know that the parathyroid were not too disturbed. Will be hoping for a clean/benign pathology report. Please keep us in the loop.

Your friend,
Kathleen

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Lulla,

My FNA was done Feb 6 & surgery not till Mar 25. Delay was my request as we had lots of family stuff going on & PCP & endo were in agreement that the delay was ok. I really don't have a clue about how fast the Hurthle cells grow/change. I imagine like anything else with this disease, there can be many variables. My R nodule turned out to be cancerous, but L one was only showing change occurring in hurthle cells (so glad they are both gone!)

It's my understanding that these Hurthle cells CAN be a benign adenoma ---- will be hoping that is true in your case. When do you have your first post op appoint? Will that be when you get pathology report?

Kathleen

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Hi !
Forgot to say that they decided to take only half out. They said that there just was no evidence of any issue with the left hand side.
My only worry is that a nodule had been allegedly found there in June- 2.7 cm - it was aspirated ( hands free) by an experienced thyroid surgeon- and it showed changing hurthle cells. Can you believe that?

Just to put my story / situation into context ... I am an expat and live in the Middle East. Health care here attracts some of the best practitioners and can be of very high standard. It is all private, unlike in Europe. I am Italian, married to a Scot, and have lived most of our lives in Scotland. We moved to dubai 7 years ago. Just telling you guys this to say that inhavebhad experience of various types of health care in different countries. I guess most people on this forum are in the US?

So anyway I obviously saw an endo and was referred to a thyroid surgeon in dubai. They were the ones diagnosed the thyrodism ( de quervain) back in June, did FNA , suggested surgery.

The delay which in the end amounted to 4 months was due to a combination of
- being diagnosed just before my holidays ( I was about to leave for a 3 week holiday in the states and then summer in Italy )
My endo said - just go and enjoy your holiday , we first need to deal with the thyrodism ( beta blockers etc) and when you come back in September we'll deal with the nodules , which are a different pathology anyway.

So off I went. While on holiday in Italy I had a scan to keep an eye on the nodules and this was the first time that they told me there were no nodules where the 2.7 cm one had been seen on scan and aspitrated. But no one could tell me just home this could be.
My bloods Aldo showed that, as predicted, the thyroiditis moved from hyper to a euth. To hypo - somwhilenon hol an endo prescribed me thyroxine 50 gr.

When I got back to dubai I had the remaining nodule aspirated - it had not grown but showed hurthle cells and lack of colloid.
So surgeon said I should go ahead with TT

Now I don't know what made me want to have a second opinion. While researching on the Internet I read about pisa ( Italy)?hospital and the fact that they are a centre of excellence for thyroid. They do 3000 thyroidectomies a year - as opposed to 500 in Milan , for example - and one of the doctors there introduced and carries out video guided, minimally invasive thyrodectomies, when suitable even using local anaesthetic. I had mivat but full anaesthetic.
I am not that bothered about the size of the scar but I like the idea of their level of expertise.
So it took just a bit longer to get the operation approved by my insurance, not so much because I wanted to be operated abroad but because initially they gave me a quote for a luxury private clinic that charged twice the going rate. ( understandably my insurance did not want to pay an unreasonable amount) eventually a couple of weeks later I got a quote for the hospital itself - which is what I wanted in the first place and was with exact same team of surgeons, but no fancy marble floors :-)

So,then the surprise that they only wanted to do half - after all I had read that with hurthle cells it's a no question TT

I suppose there is no point in me going all that way - long journey- accompanied by my husband and leaving murph daughter with friends back home, to then not take the advice of the doctors.

I have seen, therefore , that different medical schools have different approaches to thyroid issues .

Istological results take a minimum of two weeks . I will ba back home when they will send them to me. Fingers crossed its not carcinoma but hey ho! I will have to accept what comes!

Sorry about the long post - this is mybstorybso far!
Best of luck to us all.
If you have any comments I would appreciate them . :-)

Just to give

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..... And Julianne - just read that you had a lobectomy. So it's not always TT in case of hurthle cells, as I had read. So I feel better about mine too.

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Still waiting for final pathology, but in the case of an adenoma there is no reason to remove the entire gland. All said and done, if I had it all to do over I would've waited six weeks and then did the affirma test. It could be possible that that would've saved me the surgery. I am not going to pretend that I feel good right now. I feel very weak and very depressed. And I wish I would've never done this. I'm only hoping to get some words of encouragement that it's normal to feel weak and depressed and not good at this time. I'm so sad I'm at the lowest point of ever been in my life.

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