Anyone here with Hurthle Cell Carcinoma?

Posted by traceyjhp @traceyjhp, Sep 6, 2021

Hi Everyone
I'm new to the group and just wondering if anyone else has been diagnosed with Hurthle Cell Carcinoma? I've been on my journey a couple of years now. (Initially misdiagnosed but then a pathologist who was formerly with Mayo caught it which, of course, led to more surgery.) Anyone else? It definitely appears to be hard to find Physicians/ Facilities that are familiar with it.

Interested in more discussions like this? Go to the Thyroid Cancer group.

Hello @traceyjhp, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'd like to introduce you to @kellyann @maxinej @anna63 @gman007 @bartlett36 @crummens @adriennef and @marydwyer51, who may have some experiences to share related to Hurthle cells.

You mentioned being initially misdiagnosed and then it was caught and more surgery was required. How are you doing now, are you still undergoing or looking for treatments?

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Hi and thank you for your response.

I've had thyroid ablation and am being monitored with TSH suppression. My next ultrasound is to be in December to view a couple of nodules in my neck soft tissue along with a prominent lymph node. A couple of times my lab work fell out out of the "norm" in which a different type of test was then used. I was told in my last email from the doctor that "For whatever reason, the normal Free T4 level seems to be less accurate for you."

Currently, I'm looking for a second opinion with someone that has hurthle cell experience to possibly take on any treatments and monitoring.

Any recommendations?

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I was diagnosed with Hurthle cell carcinoma in July. If you find a specialist please share the contact. I can’t shake the cough and sore throat from surgery and the doctors just say it’s not related…. However I left the hospital with it!

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I had a thyroidectomy a few weeks ago and it was determined that I have Hurthle Cell Carcinoma. I’m still healing from the surgery, but meet with my surgeon and endocrinologist next week. They mentioned maybe radioactive iodine treatment, but I’m concerned as it seems it can spread to lungs, brain and bones as well as lymph nodes. I’m just wondering how they can check to see if it spread? Any advice or suggestions?

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I was just diagnosed, but it definitely feels like the doctors are guessing on how to treat this. So many unanswered questions. My case was nodule that first tested benign in 2019, no growth in 2020 or 2021 and grew 26% from 2021 to 2022. I had another biopsy that came back suspicious from Vanderbilt and a genetic lab. I had a full thyroidectomy and the pathology report came back as hurthle cell carcinoma. The surgeon mentioned maybe radioactive iodine, but I’ve read that this type of cancer has shown to spread to lung, brain and bones. I have no idea yet how they can determine if it did spread in the years that it was growing. My hope is that you are feeling well and receiving positive reports 🙂

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@koh

I was diagnosed with Hurthle cell carcinoma in July. If you find a specialist please share the contact. I can’t shake the cough and sore throat from surgery and the doctors just say it’s not related…. However I left the hospital with it!

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Welcome @koh and @cnicole.
Koh, I can see that you, like @traceyjhp, are looking for experts specializing in Hurthle cell carcinoma. If Mayo Clinic might be an option for you, you can request an appointment at any of our 3 locations. Click this link to get started either using the online form or calling: http://mayocl.in/1mtmR63

Nicole, it is hard not to worry about the possibility of cancer spreading. Deep breath and one step at a time. (I know – easy for me to say, right?). It sounds like you had a successful thyroidectomy. Radioactive iodine therapy may be recommended after surgery as extra assurance that all cancer cells have been destroyed. Radioactive iodine therapy can help destroy any remaining any traces of cancer that may not be indicated on tests. This doesn't necessarily mean it has spread.

If there are traces of cancer in the lymph nodes that would be an indicator that it has started to spread beyond the thryoid gland. Did they also remove lymph nodes during the surgery?

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Hi! Thank you for the great information. The surgeon said that he didn’t have to remove any lymph nodes. In the pathology report it says that two regional lymph nodes were tested and negative.

I believe there are quite a few lymph nodes in the neck. It sounds like the cancer would need to spread to a lymph node to be able to spread to another part of the body. Is that correct? My next question would be if only two regional lymph nodes were tested, is that sufficient or could it have moved to a non-regional lymph node to spread?

Thank you for your support and answers to these scary questions ❤️

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