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Anyone here with Hurthle Cell (Oncocytic) Carcinoma?
Thyroid Cancer | Last Active: Jan 19 8:13am | Replies (62)Comment receiving replies
I'm new to the group and just wondering if anyone else has been diagnosed with Hurthle Cell Carcinoma. I had a 6.5cm tumor and 15 lymph nodes removed in late September, and today I just had radioactive iodine ablation. It is my understanding that this may or may not work on this type of cancer however, I understand this treatment may be positive to kill any remaining thyroid tissues. This is a ton to digest. Any advice on what I should be reading to better educate myself on this cancer so I can be aggressive in treating this.
Replies to "I'm new to the group and just wondering if anyone else has been diagnosed with Hurthle..."
I don't know how old you are, but if you are young or middle-aged, the reading I have done would suggest that the 5, 10, and 20-year survival rate would all be above 90%. That said, it is very difficult to find and verify this information. I was diagnosed in 2018 with HCC. I had a 7cm tumor which they thought was benign. So I had a thyroid lobectomy. When they examined the tumor, they discovered HCC. I was not advised to have the rest removed (not sure why) so I just had that in March of 2023. They also discovered that the cancer had metastasized to the lungs. I had RAI in May, and the lung nodules did not take up the iodine. As you mentioned, HCC does not respond to RAI as some of the other cancers. But it seems they still recommend it in many, or most, cases. By the way, I am 69 years old which automatically outs me into a higher risk bracket. I wish you well!
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How are you doing @skipeak? Are you handling the iodine treatment alright?
@connierogers, how are you doing today? Do you have a treatment plan?