Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

Thank you. That’s good to know. I do have some invasion in blood vessels and the tumor was quite large. But I’m going for a second opinion since I’m a professional singer and this has been quite debilitating and scary. And I would love to avoid a second surgery in 3 months if I can. Luckily I live in NYC and there are lots of good doctors and hospitals. Thanks for reaching out to me. And stay well!!

Welcome to the group. I had a large nodule removed with a lobectomy that turned out to be Hurthle Cell Carcinoma. I have not had to have the other lobe removed( so far). It’s my understanding that if your HCC had a low level of invasion you might not need to have the other lobe removed and they can just monitor it. If you have a fairly contained cancer, you might want to ask if this is an option. It seems like they used to feel that HCC meant you had to have your whole thyroid removed, however now they don’t always have to do that. Always worth checking to see if the removal of other lobe is preventative or if it is actually a big risk due to the characteristics of the HCC. Good luck!

So glad he contacted you .
I had two surgeries as well. 90 days apart. So I understand the challenges.
Hoping all goes very smoothly

Thanks for reply. Heard from him today. I have to get the other lobe removed in 3 months and then take the radioactive iodine. Not happy about having surgery again and delaying the return of my singing voice but at least I heard from dr. Glad u survived your Hurthle issues so long ago. Stay well!

Welcome to the group. I was diagnosed 30yrs ago with Hurthle cell . It was probably hard to read. There are good things about seeing your results online, but sometimes it means we see it before our Dr have a chance to review etc. Especially surgeons have tight schedules. Hope you hear from them soon

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.