Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

Wow…I think you should get another doctor! My friend had Melanoma that Metastasized to her lungs and she was able to be treated and is currently “Cancer free.” Although all cancers are not the same, my Dermatologist told me that the use of infusions for treatment have been a game changer. Do you live near any of the cancer hospitals? Maybe a doctor affiliated with the hospital who specializes in lung cancer treatments would be a better route. Although the lung cancer might be a secondary cancer, the lung specialist might know the best way to fight the cancer since it is in the lungs. I don’t think you should wait for your doctor; definitely find a doctor who can see you right away, so you can start treatment and put your mind at ease.
Good Luck!

Im so sorry you are going through this, Tg level does depend on a lot of things, and I don't think it has to be 0. But I would find another Dr that knows about thyroid cancer, as my endocrinologist and team treat a lot of thyroid cancer and that's what you should have for the best care. Hang in there.

I was diagnosed with HCC in Aug 2019. First surgery removed right lobe of thyroid Dec 2019. Second surgery removed remaining thyroid Jan 2020, followed by RAI (110mlc) in March. My Tg level has never dropped below 27 after treatment. I was referred to endocrine for followup. She knew very little about thyroid cancer, and referred to foreign colleagues for suggestions on how to treat it. Tg level kept increasing with each 4 month followup. After a year she referred me to an oncologist. He did a PET scan Sept 2021, which showed a nodule in upper right lung. In March 2022, I had a second dose (high 155mlc) of RAI. I continue to have 4 month followups with labs and CT scans. My Tg is now 3,550, and I have multiple nodules in lungs (7-8). Most are small 2mm-4mm, with two largest at 8mm and 12mm. I have not been told of optional treatments, and do not want a third RAI as it does not work on Hurthle Cell. Again, my Oncologist knows little about thyroid cancer. I know nothing about the rising Tg or what it means. I do a search about Tg and nothing helpful comes up, except it should read -0-, which scares the heck out of me. No one seems to be able to put me at ease, and the radiologist stated "worsening is evident." I found that to be very threatening, like "death is imminent." Now my oncologist cancelled this weeks appointment and I have to wait a month to get in, but I will only see the NP. Should I find a new doctor? I need answers! I am 74, and feel as healthy as I was in my 60's. I have no symptoms of pain, nausea, loss of appetite, weight loss, fatigue, etc. I would think if things were really bad I would feel it. The stress and anxiety of not knowing is what is eating at me.

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?