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.

traceyjhp | @traceyjhp | Sep 7, 2021

Hi and thank you for your response.

I've had thyroid ablation and am being monitored with TSH suppression. My next ultrasound is to be in December to view a couple of nodules in my neck soft tissue along with a prominent lymph node. A couple of times my lab work fell out out of the "norm" in which a different type of test was then used. I was told in my last email from the doctor that "For whatever reason, the normal Free T4 level seems to be less accurate for you."

Currently, I'm looking for a second opinion with someone that has hurthle cell experience to possibly take on any treatments and monitoring.

Any recommendations?

John, Volunteer Mentor | @johnbishop | Sep 6, 2021

Hello @traceyjhp, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I'd like to introduce you to @kellyann @maxinej @anna63 @gman007 @bartlett36 @crummens @adriennef and @marydwyer51, who may have some experiences to share related to Hurthle cells.

You mentioned being initially misdiagnosed and then it was caught and more surgery was required. How are you doing now, are you still undergoing or looking for treatments?