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Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

Thyroid Cancer | Last Active: Jan 19 8:13am | Replies (62)
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@bevr

Hello Everyone -

I'm very glad to have found you, since I was diagnosed with Hurthle Cell this past January. My thyroid had been removed 20 years ago. When I noticed a growth this past October events were sent in motion. Removal of the 3.5 cm lump revealed solid Hurthle Cell Cancer. I've had RIT and am waiting a few months now to see how well it worked, and to see how the numbers of the thyroglobulin test move. It's now at .4, which I've been told is very low. I just hope the number moves downward. I'm a bit nervous because HCC doesn't accept radiation well. It seems that there aren't many treatment options if it spreads. Is there anyone who has had HCC for a number of years? I'm wondering what my future holds!

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Replies to "Hello Everyone - I'm very glad to have found you, since I was diagnosed with Hurthle..."
danielleckard | @danielleckard | Jun 25, 2023

Hello bevr and Everyone!

I too am glad that I found this group. I was diagnosed w Hurthle Cell in March of 2020. I had a large tumor in my right side of my thyroid and was having routine biopsies since 2017. All benign. It was removed bc it was affecting my swallow, since it was benign I had it removed trans orally, so between my chin and gums so to speak. This way no scar! I too had RAI but was told that was to kill remnants of thyroid tissue, it doesn’t kill HCC. From there my number crept up. Starting at 1.6 (which I was told was low ) and went up from there throughout 2021 until they hit the magic number of 10. I say that bc once they hit 10 I could have a PET to find out where it was. There was a mass right above my vocal cords. Removed that Dec of 2021 and had targeted radiation therapy. Before radiation began my numbers were at 4.8. They remained there after radiation. Only to start climbing once again in 2022. I had another PET in November and it showed cancer in my chin, they felt that was odd so I had a biopsy and sure enough it was cancer and it also involved my left mandible. My number climbed even higher the highest 16.7. Had another PET and a second opinion. Both Hopkins and UofMD agreed. I needed surgery to remove it with another round of radiation. I am currently recovering from my surgery where they removed a mass from my chin along w 3 other tissue specimens and a bone specimen. Only the mass was positive for cancer so that was good news. I just had bloodwork and my number are down to 6.9. I hoping for lower but will continue to pray that radiation kills it all. My neck is clean. No sign. They believe that it is seeding in my chin not a true metastasis, but at the end of the day I still have this. My surgeon says this. “Hurthle Cell is a crummy cancer. Fires will always need to be put out. In between those fires you live. Take that European vacation “. That is what I did in April right before surgery.

Bevr- live and with numbers at .4, let the doctors do the worry. They will let you know when to worry.

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