Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

I was recently diagnosed as well. It was missed in 2019 when the module was first found at 4 cm. They biopsied it in April 23 when it had grown to 7 cm. The initial pathology report was follicular carcinoma with Oncocytic features. They commented they were being conservative given how rare that variant of follicular carcinoma is. After my total Thyroidectomy in June the laboratory at the hospital where I had the surgery done concluded it was Hurthle call carcinoma but when they sent it for a second opinion at their sister facility they called it follicular with Oncocytic features. The surgeon didn’t sample my lymph node per my endocrinologist request so now I’m waiting to start radioactive iodine therapy in the next week (my TSH just rose to 31 months on Friday) and they will do a full body scan a week later to see if/where it has spread. The good news is it’s not anaplastic carcinoma. The prognosis for Oncocytic/Hurthle cell is good. Even if it does spread, the success of radioactive iodine is reportedly good as long as you’re compliant with the low iodine diet so your body with be able to absorb the treatment. What amazes me is how different peoples experiences have been. I was told from the beginning that the whole thyroid needed to come out. That they said was better that going in twice. I’ve been experiencing vertigo for just over a year and all tests and physical therapy has been unhelpful. One of 3 neurologists that I’ve seen and my general surgeon were certain is was due to the tumor cutting of circulation to the brain. They were tight because those symptoms resolved a few weeks after surgery. As far as the question someone had about requiring a specialist versus a general surgeon, my endocrinologist recommended the particular general surgeon because he had performed hundreds of these procedures in his 40 years practicing. So I felt confident in his ability. Good luck to you. We’re in this together.

That’s interesting that they told you it wasn’t related. My surgeon expressly stated that is a normal side effect and that it should resolve in 3-4 months but if it persists beyond that, I might need speech pathology. I’ve found several sources that said the same. Good news is it pretty much gets me out of talking in meetings but bad news is I can’t hit those high notes in the shower or car…

I was referred to nuclear medicine and currently awaiting treatment in the next week but both my endocrinologist and the radiologist explained how they figure out if it’s spread is after radioactive iodine attaches to any thyroid cells (it includes the cancer that has spread as they originate as thyroid tissue cells), the total body scan will light up and this is used as a baseline. They repeat tue therapy and scan in 6 months. If there were any signals seen previously, they second treatment will be a higher dose. They keep repeating it till it’s gone and then monitor to see it it returns. Thyroids are not supposed to regenerate but there have been reports of the entire organ growing back. Best wishes to you.

Here is some great general info about treatment. I’m on Levothyroxine. I started on 88 mags and was just increased to 112 because my TSH was still elevated. I’ll resume after my radioactive treatment. Here’s some great general info in medscape under articles 279462-treatment (was unable to post link here.

@armichic, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe.

Please allow me to post it for you:
- Hurthle Cell Carcinoma (Oncocytic Carcinoma) Treatment & Management https://emedicine.medscape.com/article/279462-treatment?form=fpf

Thanks so much!

I'm trying to help my parents get some answers.
My dad had been having some leg pain for a few months, being a man and stubborn he wouldn't go to the doctor. He ended up having a fall and thankfully he wasn't hurt but that finally pushed him to go get his leg checked. After an X-ray they said they saw a spot on his right femur and wanted him to have a CT. After that scan I feel like everything went in warp speed to where we are today. The CT pushed his primary care physician to contact an orthopedic oncologist. They then ordered an MRI. His primary care physician wanted to do blood work, a chest x-ray, and an EKG while waiting for those results. After the chest x-ray, they saw spots on both lungs. We met with the orthopedic oncologist on 10/12 and he wanted to do surgery on his leg on 10/18 because his bone was weakening. He had a PET scan on 10/17 and surgery on 10/18. They put a rod in the right femur to stabilize that bone. The PET scan showed thyroid, both lungs, and right femur as having disease in them. They did a biopsy of the thyroid while he was in the hospital last week with the leg.
We did meet with a medical oncologist yesterday who had a report from the pathologist that says he has metastatic thyroid carcinoma that represents as follicular/hurthle cell carcinoma.
Other than the leg pain he has had no symptoms. No cough, no hoarseness when he talks, nothing to make us think he's even sick.
We didn't get the warm and fuzzies with the oncologist we saw yesterday and that's ok I don't expect a doctor to be our friend, but I think we're more confused now than we were prior to meeting with him.
He did say it's not a large bulk of cancer, which is good, and he said he does believe all spots (lungs and leg) are thyroid. But he said he doesn't treat this type of cancer. He would refer him to an endocrinologist, and he would play quarter back between the doctors. I guess my question is, is this normal? Or is there an endocrinologist oncologist? I guess I'm trying to figure out do we need a quarter back?

Hello @melijord95 and welcome to Mayo Connect. It sounds as if your family is dealing with some unexpected health issues. I can understand your need for information and support.

While I do not have the specific type of cancer that your dad has, I do have a rare, hormone-related cancer, neuroendocrine tumors, so I do understand the need to have an endocrinologist as a quarterback. I have an endocrinologist as well.

Endocrinologists are amazing doctors who have a knowledge of the body systems and are a great addition to the rest of your dad's medical team. The endocrinologist that I see works well with my other specialists and she explains to me what is going on and how the various systems work together. This type of specialist will undoubtedly be an asset to you and your family.

How is your dad doing post-surgery?

@melijord95
Wow! It is amazing how a pain in the leg can lead you down a path that gets diverted to other issues….your father is lucky to have finally gotten treatment and the issues were discovered. Although I think ENT’s must have experience with thyroid cancer, since Hurthle Cell Carcinoma is considered fairly rare, you might benefit from going to an ENT who has significant experience with this type of thyroid cancer. In my opinion, it might be helpful to have someone on your oncology team with significant experience with this type of cancer; the doctors you are using might have this but it is worth asking. If you live near one of the big cancer hospitals, they might be able to give you the name of someone.
When reading about Hurtle cell carcinoma, there seems to be changes in how they treated it. It seems like they used to think Hurthle Cell Carcinoma of the thyroid gland required complete thyroidectomy, however now there are SOME situations where a lobectomy can be done in stead of a complete removal.
I view Hurthle Cell Carcinoma as a “sneaky” cancer. It seems to start in the thyroid gland but has the ability to travel through the circulatory and lymphatic systems to cause problems in other places. In my opinion, having a doctor who has a lot of experience with this type of cancer is advantageous so they will be able to recognize if a new issue crops up that could be related to Hurthle Cell Carcinoma spreading. There are so many new ways to treat cancer so having someone with Hurthle Cell Carcinoma experience might help pick the least invasive most successful treatment.
Good luck!

Thank you for your response.
He’s doing great post surgery. He’s of course having to use a walker but he’s done so good with it.
We’re still trying to figure all this out and get more clarification. The oncologist we saw is who saying we need to see an endocrinologist which I do agree with that but the oncologist is who is saying he wants to be the “quarter back” I’m wondering if we just need an endocrinologist or is there a endocrinologist oncologist? Until this I didn’t realize there were orthopedic oncologist.
We just want to do what ever we can to make the right decisions.