Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

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.

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!

Hi!
I had a large thyroid nodule on my right lobe and had surgery in July 2022; whereupon I was diagnosed with Hurthle Cell Carcinoma. I had my surgery at MSK and the surgeon has a background with Hurthle Cell Carcinoma. Although I had the right lobe, isthmus and one parathyroid removed, there has not been any discussion about having my left thyroid lobe removed. I am being monitored and had to start Synthroid. I am hopeful that I MIGHT be able to stop the Synthroid and my left lobe will work well enough, however I am unsure if this is a realistic thought (I am considering changing endocrinologist). I have some concerning side effect with a pain in my neck and tightness but so far they tell me it is not a concern.

Although every case is different, there seems to be a line of research that states that you don’t always have to have the entire thyroid removed after diagnosis of Hurthle cell carcinoma. I don’t know if the surgeon will be mentioning this at a later date, but so far it has never been mentioned to me.
If your son is not being seen by a cancer specialist, you might want to consider a second opinion in case he is a candidate for “monitoring” instead of a second surgery and the definite need for Synthroid. A lot depends on how encapsulated the nodule was; however it might be an option!

The unknown is scary, but just keep researching and asking questions. Taking a minute to breath and think things through is important, In my opinion, a second opinion by a surgeon who specializes in Hurthle Cell Carcinoma might help put your mind at ease on treatment options for your son.
Good luck!!

Hi Jill, I can imagine you’re very scared. He’s only 21. I bet you wish you could change places with him.

As you may know, oncocytic carcinoma of the thyroid (OCA) is sometimes referred to as “Hürthle cell” carcinoma. With that in mind, I moved your post to this existing discussion about Hurthle cell cancer.
– Anyone here with Hurthle Cell Carcinoma?https://connect.mayoclinic.org/discussion/anyone-here-with-hurthle-cell-carcinoma/

I did this so you can read the posts from others and connect easily with members like @koh @cnicole @traceyjhp @paul300 @skipeak @connierogers @susanau @bfrank and others.

Your son might also be interested in joining the Young Adult support group. There is a discussion forum and a monthly Zoom meeting. See here
- Adolescent & Young Adult (Aya) Cancer https://connect.mayoclinic.org/group/adolescent-young-adult-aya-cancer/
- AYA (Adolescents and Young Adults) Support Group https://connect.mayoclinic.org/event/aya-adolescents-and-young-adults-support-group-1/
The next meeting is on Thursday, Feb 2

When is his next surgery coming up? How is he doing?

Hello @jillridged10 and welcome to Mayo Clinic Connect. I am so sorry to read what your son, and you as his caretaker, are going through. Being scared during times of uncertainty is so normal and I'm glad you've reached out to others for support.

When was his right thyroid removed and when is his next thyroid removal scheduled for?

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.

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.

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.