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Hurthle carcinoma (folliculur)

Posts: 3
Joined: Aug 2010

I am so new in this. I had my thyroid removed because of a malignant tumor(nodule)on it. Now several months later, my endo doctor tells me that it was very unusual, rare,) and aggressive. She called it Hurthle. I am just now taking step 1 for second opinion, even though I have read about it on the computer. That one reason for it, is possibly too much radiation. I did work outdoors for 14 1/2 years ( and had pleanty of skin cancers). I keep reading all of your inputs but no one has indicaated a name for this cancer that spreads to the lungs (which I believe is Hurthle). Symptoms were shortness of breath, dry cough, and a little problem swollowing. I will see the onocology or ENT at Shands Hospital in Gainesville, Florida on 9/13. I have to admit, I have suspected something a little off in the lungs. The Lung doctor said my cough sounded like an inflamation of the lining of the lung. If anyone out there can relate to any of this, I would appreciate your comments. RedFox

Posts: 32
Joined: May 2010

Hi Redfox,
I have Hurthle cell carcinoma and I know how frightening and confusing it can be. I was diagnosed in 2006, had a total thyroidectomy after a thyroid mass was removed and showed Hurthle cell cancer as well as a small follicular cancer mass. My surgeon was confident that all the thyroid was removed and advised me that I needed no further treatment, just thyroid meds. I was thrilled with the good news and just let my PCP handle any followup tests. My tests all came back fine. In Feb. 2010 I found a small nodule on my neck. My dr. thought it was a cyst, but with my history of cancer he sent me for a sonogram which was inconclusive. I then had surergy in May to have it removed. It was a recurrance of Hurthle cell cancer. By that time I had another mass I could feel on my neck. In July I had a bilateral neck dissection. The surgery lasted 5 1/2 hours and an additional cancerous tumor was involved. I am now on the low iodine diet and off my thyroid meds. I should be ready for the rai treatment next week. That will most likely be followed with external beam radiation.

My advice is to be assertive with your doctors. Hurthle cell cancer (HCC) is quite rare and most of the health care professionals you will encounter will NOT be familiar with it. Learn all you can and become your own health care advocate. Don't be afraid to ask questions and don't assume your doctors are well informed on HCC. I finally have a team of doctors who have taken the time to work together on my case. By the way, I live near Jacksonville, FL and my doctors are with Baptist Medical Center here. My "team" consists of a head and neck surgeon, a radiology oncologist, a medical oncologist and an endocrinologist, as well as my primary care physcician. I'll always wonder if I had been more diligent back in 2006 when first diagnosed if I could have avoided these recurrances. From now on I am taking the lead and making sure I stay on top of this.

I wish you all the best. There are some excellent posts on HCC on this site, as well as on the Thyroid Cancer Survivors site.

Posts: 3
Joined: Aug 2010

Thank you for the come back. I am so angry right now, as I had just typed you about 250 words in responsse, and I lost it somehow. I am so angry and tierd now. Anyway, please keep me posted. I will try to do the same. It looks like you have been through the mills with this hurthle stuff. Going to Shands on the 13th. Gut feeling is that I wont know any more then, than I know now. I cant remember where, but seems like I read that there is no cure for this. May be wrong, but I sure am down about it all. I know that keeping positive is the best treatment. For now Alice, take care my friend. Glad you are not too far from me. I live 2 miles out of Winter Garden. Stay well and we have to trust God on this one. Pat

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