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.

lindaadele | @lindaadele | Jan 1 3:05pm

In reply to @cmartin77 "@lindaadele thank you so much for sharing that! I expect mine will come back as well❤️" + (show)

@cmartin77 you’re very very welcome!!! One day at a time is the best way to go!!! Best wishes to you!!!

cmartin77 | @cmartin77 | Jan 1 2:32pm

In reply to @lindaadele "@cmartin77 I had my thyroid cancer surgery over 25 years ago so I really don’t remember..." + (show)

@lindaadele thank you so much for sharing that! I expect mine will come back as well❤️

lindaadele | @lindaadele | Jan 1 11:55am

In reply to @cmartin77 "@ejjb thank you. i’m recovering slowly. everything seems to have gone well. still can’t talk but..." + (show)

@cmartin77 I had my thyroid cancer surgery over 25 years ago so I really don’t remember everything so well. What I do remember is that TTalkingwas very difficult at first when I had to order food I remember at the deli department in the supermarket my voice was so low that the man couldn’t even hear what I was saying but gradually it will get better absolutely one day at a time!!! One of my vocal cords was also paralyzed and I was told it was never gonna come back again but it did so do not give up hope each day take one day at a time!!! wishing you the very very best of luck going forward!!! Keep your glass half full and go with the flow!!!

cmartin77 | @cmartin77 | Jan 1 8:09am

In reply to @ejjb "@cmartin77 How did your surgery go? How are you feeling? Wishing you a fast recovery." + (show)

@ejjb thank you. i’m recovering slowly. everything seems to have gone well. still can’t talk but they said that would happen so i’m being patient for now❤️

ejjb | @ejjb | Dec 31, 2025

In reply to @colleenyoung "@cmartin77, you can connect here with other members living with hurtle cell cancer like @traceyjhp @koh..." + (show)

@cmartin77 How did your surgery go? How are you feeling? Wishing you a fast recovery.

cmartin77 | @cmartin77 | Dec 23, 2025

In reply to @colleenyoung "@cmartin77, thinking of you as you prepare for surgery." + (show)

@colleenyoung thank you so much! you are very thoughtful

Colleen Young, Connect Director | @colleenyoung | Dec 22, 2025

In reply to @cmartin77 "@colleenyoung thank you colleen. i feel pretty positive about it now. have surgery scheduled on the..." + (show)

@cmartin77, thinking of you as you prepare for surgery.

cmartin77 | @cmartin77 | Dec 14, 2025

In reply to @colleenyoung "@cmartin77, you can connect here with other members living with hurtle cell cancer like @traceyjhp @koh..." + (show)

@colleenyoung thank you colleen. i feel pretty positive about it now. have surgery scheduled on the 23rd to remove my thyroid. nothing else is being discussed until after that. surgery makes me worry but they sound like they do this a lot so i’m trying to not think too much about it.

Colleen Young, Connect Director | @colleenyoung | Dec 13, 2025

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

@cmartin77, you can connect here with other members living with hurtle cell cancer like @traceyjhp @koh @cnicole @bfrank @skipeak @bevr @danielleckard @504branchie @medicalinterest @armichic @ahren2016 @ejjb and others.

Cmartin77, what treatment is being recommended for you? How are you doing?

judy3276 | @judy3276 | Dec 3, 2025

In reply to @ejjb "Can anyone tell me what radioactive iodine therapy is like?" + (show)

@ejjb Mine was YEARS ago, but I went to a special room at the hospital where a gowned and masked stranger gave me a thick heavy container. I swallowed the glob that was in it and was rushed to my car to go home. Once home, I had to stay away from the family for a week. It did some damage to some of my salivary glands. Be sure to have PLENTY of had candy to suck on which does help. Toilet had to be flushed 2x handwashing 2x, separate trash bags etc. Then a full body scan some time later to be sure no iodine is being absorbed. That is all I remember. Best of luck to you, it's really easy after what you have already been through.