Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

Posted by traceyjhp @traceyjhp, Sep 6, 2021

Hi Everyone
I'm new to the group and just wondering if anyone else has been diagnosed with Hurthle Cell Carcinoma? I've been on my journey a couple of years now. (Initially misdiagnosed but then a pathologist who was formerly with Mayo caught it which, of course, led to more surgery.) Anyone else? It definitely appears to be hard to find Physicians/ Facilities that are familiar with it.

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

koh | @koh | Aug 2 10:26am

In reply to @bayougirl1982 "I was just told that they are high suspicious that i have it but my biopsy..." + (show)

Did they do “Anfirma testing?” From what I have read, biopsies with Affirma testing have the highest probability for accuracy. ….I heard about this when I went for FNA to determine if I was a candidate for Radio Frequency Ablation. In my opinion, if there is a test that has high probability for identifying cancer, I would have the test done before making a decision about surgery. Removing your thyroid, or part of your thyroid, is sometimes necessary, however removing the thyroid and finding out it was a benign nodule that might have been able to be shrunk would be very disappointing. It seems like a lot of people do well taking thyroid medicine, however after a lobectomy, I am having a lot of difficulty with the side effects from the small dose of medication, or the hypothyroid issues…..I don’t know which is causing the issues. I have had several medication changes and dosage changes, however side effects have been very difficult.
Good luck!!

bayougirl1982 | @bayougirl1982 | Aug 4 1:36pm

In reply to @koh "Did they do “Anfirma testing?” From what I have read, biopsies with Affirma testing have the..." + (show)

No I never heard of that testing but I can definitely ask Wednesday when I go and meet with surgeon. Thanks for all the info . I started looking into the meds and from what I'm seeing is the natural is better than the synthetic with fewer side affects. I wish you well and hope they can get your meds correct for you to start feeling better

ejjb | @ejjb | Oct 14 9:15am

I was just diagnosed with this after a thyroid lobectomy. My surgeon wants to remove the other side of my thyroid and do radioactive iodine therapy after. They'll do another ultrasound before the 2nd surgery to see if any lymph nodes are swollen, so they know what extra to remove.

Original Diagnosis:
Minimally invasive oncocytic carcinaoma with angioinvasion (one vessel)
7 regional lymph nodes negative for tumor/carcinoma
all margins are negative for carcinoma
tumor fully encapsulated, but 5.5 cm in size

ejjb | @ejjb | Oct 14 9:15am

Can anyone tell me what radioactive iodine therapy is like?

cmartin77 | @cmartin77 | 19 hours ago

i was diagnosed with graves and now hurtle cell cancer. i hear this increases the mortality rate. i’m worried but trying to stay positive. is there a support group nearby to talk about this? i don’t want to worry my family and friends so i don’t really want to talk about it with them

lindaadele | @lindaadele | 2 hours ago

In reply to @cmartin77 "i was diagnosed with graves and now hurtle cell cancer. i hear this increases the mortality..." + (show)

@cmartin77 : I had thyroid cancer over 25 years ago. I also had a variant of thyroid cancer that was very very aggressive. It was called diffuse sclerosed variant. Having thyroid cancer can be very very overwhelming! My advice to you would be keep your glass half full and go with the flow. Ask your doctor any questions that you have any concerns that you have. Wishing you the very very best going forward!!!