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Anyone here with Hurthle Cell (Oncocytic) 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.

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teanna | @teanna | Jan 19, 2024

Im so sorry you are going through this, Tg level does depend on a lot of things, and I don't think it has to be 0. But I would find another Dr that knows about thyroid cancer, as my endocrinologist and team treat a lot of thyroid cancer and that's what you should have for the best care. Hang in there.

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koh | @koh | Jan 19, 2024
In reply to @normalinda "I was diagnosed with HCC in Aug 2019. First surgery removed right lobe of thyroid Dec..." + (show)
@normalinda

I was diagnosed with HCC in Aug 2019. First surgery removed right lobe of thyroid Dec 2019. Second surgery removed remaining thyroid Jan 2020, followed by RAI (110mlc) in March. My Tg level has never dropped below 27 after treatment. I was referred to endocrine for followup. She knew very little about thyroid cancer, and referred to foreign colleagues for suggestions on how to treat it. Tg level kept increasing with each 4 month followup. After a year she referred me to an oncologist. He did a PET scan Sept 2021, which showed a nodule in upper right lung. In March 2022, I had a second dose (high 155mlc) of RAI. I continue to have 4 month followups with labs and CT scans. My Tg is now 3,550, and I have multiple nodules in lungs (7-8). Most are small 2mm-4mm, with two largest at 8mm and 12mm. I have not been told of optional treatments, and do not want a third RAI as it does not work on Hurthle Cell. Again, my Oncologist knows little about thyroid cancer. I know nothing about the rising Tg or what it means. I do a search about Tg and nothing helpful comes up, except it should read -0-, which scares the heck out of me. No one seems to be able to put me at ease, and the radiologist stated "worsening is evident." I found that to be very threatening, like "death is imminent." Now my oncologist cancelled this weeks appointment and I have to wait a month to get in, but I will only see the NP. Should I find a new doctor? I need answers! I am 74, and feel as healthy as I was in my 60's. I have no symptoms of pain, nausea, loss of appetite, weight loss, fatigue, etc. I would think if things were really bad I would feel it. The stress and anxiety of not knowing is what is eating at me.

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Wow…I think you should get another doctor! My friend had Melanoma that Metastasized to her lungs and she was able to be treated and is currently “Cancer free.” Although all cancers are not the same, my Dermatologist told me that the use of infusions for treatment have been a game changer. Do you live near any of the cancer hospitals? Maybe a doctor affiliated with the hospital who specializes in lung cancer treatments would be a better route. Although the lung cancer might be a secondary cancer, the lung specialist might know the best way to fight the cancer since it is in the lungs. I don’t think you should wait for your doctor; definitely find a doctor who can see you right away, so you can start treatment and put your mind at ease.
Good Luck!

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ahren2016 | @ahren2016 | 18 hours ago

Husband was diagnosed in August needle biopsy showed papillary but thyroid tested for Hurtle Cell during pathology. Radical neck dissection in September, now there are small nodes showing up in left lung. Doctor suspects mets but states nodes are too small for PET scan. We are shocked! Going for a second opinion and care plan.

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ahren2016 | @ahren2016 | 18 hours ago
In reply to @cnicole "I was just diagnosed, but it definitely feels like the doctors are guessing on how to..." + (show)
@cnicole

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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Husband diagnosed in August. Radical neck dissection in September, nodes involved as well as soft tissue. Being treated with TSH hormone, keeping numbers as low as possible, also having his markers checked and this time they came back elevated. Doctor ordered CT scan with contrast and nodules 8mm and smaller showing in his left lower lung. Doctor states that a PET scan would not show because nodules are too small so wants to rescan in April to see if there is growth. We have registered at another university for a second opinion on the care plan.

Good luck and please keep me posted.

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