Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

Oncocytic Carcinoma Thyroid Cancer
My 21 year old son has Oncocytic Carcinoma Encapsulated Angioinvasive Thyroid Cancer. He had his right thyroid & mass removed. His next surgery is scheduled to remove his left thyroid then a scan to see if it spread. Very scared & looking for a advise.

Hi Colleen,
Thanks so much for your reply. While I will have to retrace my steps to find specific information (often conflicting as the source then becomes more important) as to HCC spread, I did find this statement in the Clayman Thyroid Center article:

"Hurthle cell cancer has a greater risk of growing into blood vessels in and around the thyroid. This is called angioinvasion. This occurs, in fact, more frequently than hurthle cell cancer spreads to lymph nodes."

So, yes, as you point out, there is most certainly lymph node involvement in HCC spread but angioinvasion is seen as well. I don't think this statement clarifies where HCC tends to spread first.

If I find more information about this, I'll post it here. Thanks again, Colleen.

@paul300, thanks for jumping in to question the accuracy of HTC spread. I did some more digging and found conflicting information.

"Hurthle cell thyroid cancer is now defined as a follicular thyroid cell “derived” cancer and not a variant of follicular cancer itself."
- Hurthle Cell Thyroid Carcinoma https://www.ncbi.nlm.nih.gov/books/NBK568736/

"Hurthle cell cancer can spread into the lymph nodes of the neck. In fact, at least 20% of hurthle cell cancers will have spread to neck lymph nodes on their initial presentation." https://www.thyroidcancer.com/thyroid-cancer/hurthle#:~:text=Hurthle%20cell%20cancer%20certainly%20can,nodes%20on%20their%20initial%20presentation.

"About 20–30% of HCC cases have metastatic extension at the time of initial treatment. The most frequent sites of metastasis are the lungs and bones." https://academic.oup.com/qjmed/article/112/6/453/5255882

"Hürthle cell carcinoma (HCC) is a rare tumor that tends to metastasize to the lymph nodes." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2931345/

You won't be able to share links yet because you're a new member. But maybe you can tell me where to look for further information about typical spread for HCC. It is confusing. Do you have metastatic HCC?

Colleen,
--->"Hurthle cell carcinoma, which is a variant of follicular thyroid cancer, tends to spread first to the regional lymph nodes."

Can you double-check this? Everything I have read seems to say that HTC does not tend to spread to regional lymph nodes initially.

Nicole, cancer can spread in different ways:
- through the bloodstream or lymphatic system
- by growing into nearby healthy tissues
See this helpful article that explains more fully:
- How Cancer Spreads https://www.cancer.gov/types/metastatic-cancer

Hurthle cell carcinoma, which is a variant of follicular thyroid cancer, that can spread to regional lymph nodes. If they were negative, then there may not be reason to remove further lymph nodes at this time, but continue to monitor through regular follow-up appointments that include exams, blood tests, and maybe other tests to see if the cancer has come back.

Your questions are very good questions for which I can only share general answers. I encourage you to ask these same questions of your cancer team so that they can confirm more specifically about which lymph nodes were tested and are 2 nodes enough, as well as discuss your follow-up regimen. Share your concern about spread so that they can tell you about the plan.

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.

I am sorry to hear the HCC spread beyond the thyroid. I am sure this is a fear for many of us. I am so new at this but it feels like the first line of treatment is to treat HCC like any other thyroid cancer and see what happens. I feel as though, as part of my journey, I need to at least look for a early treatment plan as opposed to waiting for the spread to happen. I have heard HCC is aggressive, it will spread, it is just a matter of when and where. They won't say it in those words but the three Endocrinologist do not see any reason to involve an Oncologist and I am not understanding why an Oncologist would not be part of the team. My diagnosis was 6.5 cm with evidence of vascular invasion.