Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

Did you ask for another opinion
Me l got carcinoma in my write lob and l
Have a lobectomie one month ago and now I’m waiting for the oncologist to call me if l
Need chimo or radiation or nothing but it’s scary and l understand you me l
Try to be strong for my children and me be it’s hard but l stay positive
Good luck stay positive

This is a condensed version of my husband's experience. His was first discovered in September 2005 at age 34 during a procedure to remove what they suspected was a "cyst" in his neck. He had a multinodular mass measuring 9.2 x 9.0 x 2.4 cm, later identified as Hurthle Cell. He had two surgical procedures; the second was quite extensive as the tumor was invasive to strap muscles and the esophagus. Thyroplasty was performed to improve damage to the voice box, followed by 28 radiation treatments. In December '09, he had a recurrence requiring another extensive surgery/neck dissection and radioactive iodine therapy. In 2011 they found that the HCC spread to his lungs, and they did bilateral radiation. In September 2015, another recurrence in the neck required another 33 doses of radiation. Since then, they have been monitoring tumors in the lungs and the area of the internal carotid artery. Because of repeated radiation to the areas as well as multiple surgical procedures to the neck, they are just watching the areas. They will not treat it unless it becomes vital.
The most recent biopsy last month confirmed HCC in the rib bone. As of now, we believe the plan will be to do some type of pin-point radiation to the bone.
In these past 17 years, he's never gone more than six months without an in-person appointment and scans (they would rotate between PET & MRI and always did an ultrasound) with his doctor.
Ask a lot of questions and report anything that is even slightly out of the norm. When his cancer recurrence was discovered in 2015, it was because I brought up to the doctor during his checkup that my husband mentioned to me that his tongue felt twitchy and he couldn't roll it. This led to additional scans that day and the findings of tumor.

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.

You stated that HCC will spread is just a matter of time.
Can you point to where you heard or read this? My doctor believe HCC is fully curable. I’m not disputing your comment,I’m just trying to fully understand what I’m up against. There is so much information and i can’t figure out the truth. Hang in there!

How are you doing @skipeak? Are you handling the iodine treatment alright?

@connierogers, how are you doing today? Do you have a treatment plan?

Doing good. Really no adverse symptoms so far. Just isolation. I get my scans this Wednesday to see where we go from here and to see where the radiation is in my body. I’m suspecting still traces in my neck. My surgery took over 6 hours to remove most of the cancer and he thought it got the majority of it but said it was delicate. Any recommendations on where to go from here?

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.

@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?

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.

Thanks, Paul. I edited my reply to remove reference to where HCC spreads first. That is an important distinction and your note about spread through the blood vessels.

@cnicole, I hope you are following the exchange between @paul300 and myself about the spread of Hurthle cell cancer to help you know what questions to ask your cancer team about monitoring for spread.