Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

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?

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?

Thanks so much!

@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

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.

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.

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 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.

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.

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!