Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

I just had surgery two weeks ago -hemi thyroidectomy and just got results that it’s Hurthle cell cancer. Haven’t heard from surgeon yet which pisses me off even though I called when I saw results in portal late Friday afternoon. All I know is from why I’ve red compulsively on the internet all weekend. This group very helpful. Thanks all

Hi @melijord95, how is your dad doing? Has he been referred to or already seen an endocrinologist?

I have hurthle cell carcinoma. I had an endocrinologist, a primary care, an oncologist and they consulted other specialists. They worked collaboratively... it was sometimes complicated to know which to report what to... but if I was sending emails I included all ... and they were willing to consult with each other. You do want the expertise from all in unique cases... and you do want a "quarter back" who is willing to ensure all the peices fit together. Nothing forgotten. How awesome you have someone who cares enough to step up and take that role.
I always follow a few guidelines for myself.
1) if I have a CT or scan MRI etc or even hospitalization happening I make sure that I let my other docs know.
2) if one Dr orders lab tests , I ask the others if they have any to add... so I don't have duplicate trips and stabs
3) if I have an MD/Specialist appt I always send an email...asking if there are labs I should do before the appt. If so , then I follow #2 again
4) if I have a big decision to make Ill try to hear input from the other relevant person ...being careful not to get to many inputs. But I am blessed that all my Dr once called a group mtg and reached a preferred path for me as a group ... that truly did support me
5) I never allow myself to be pushed for a decision to fast. I don't hesitate to say" I need to pray on this overnight" unless I'm in an emergency and it's urgent.
6) quality of life matters ... but I also know some poor quality for a while may be necessary to give me an opportunity for a longer life
Hoping this helps and that you heal quickly!

You are asking good questions, @melijord95. If I were you, I would call the office and ask the doctor to clarify what he means. I might also inquire if he has a referral to the endocrinologist that he wants your dad to see.

I look forward to hearing from you again as you seek the best providers for your dad. Will you let me know how your search for the endocrinologist goes?

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.

@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!

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?form=fpf