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.

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?

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?

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!!

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!

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.

Yes. I was diagnosed with Hurthle cell cancer many years ago. I had a removal of my thyroid and went on Synthroid with no I'll effects. However the tumors came back about 20 years later with the doctor saying that sometimes they dont get it all orginally. I did not know anything about this on the first surgery but later was told Hurthle cell is aggressive. Both surgeries were without complication but I wish I had been better informed originally. I suggest you push your medical team for thorough education on this.

Yes, I was just recently diagnosed and it was found on accident due to a cough I've had for a long time and other complaints. I just had a TT two weeks ago and am hoping to be seen by a team of doctors at Mayo for a follow-up and ongoing care. My concerns are that scans show a small spot on my lung, and some 'cysts' on my liver as well as ongoing pain in my hip and back that basically have been pushed aside. Coincidentally, I've been dealing with diverticulitis and multiple infections of Cdif during the past few months, which hasn't helped me get anywhere fast. I've been complaining of the pain in my hip for a long time as well as my back, however, I finally had some images performed in the last three months showing the spots listed above. I want to be sure that the cancer did not unknowingly spread before we found it in the thyroid to the lung and or liver and or bone, which are the three top spots from what I've read, for HCC. I am a pretty strong person and tend to live with a lot of pain, but now that I know this is cancer, I'm concerned. Do you know anything else about this? Have you seen doctors at Mayo that you'd recommend? Thanks for any input you have, and for sharing your experiences.

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!

I've posted before but if I can help your concerns, I'm in my late 80s, had the first time about HCC almost 30 years ago. Had a total removal of thyroid (I thought), went on Synthroid. It returned in 2017 as the dr. said sometimes pieces are left from first surgery. I had no problem with either surgery or the Synthroid. I would suggest however that you urge thorough explanations from your doctor as I did not. I'm in relatively good health for my age, with Type 2 Diabetes under control. The doctor said HCC is a particularly aggressive type of tumor but not necessarily malignant. My second surgery was malignant neoplasm though. So ask questions, I did not.