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alan47 Newbie  Posts: 3 |
posted 12-29-2002 12:40 AM
  
i have a very rare form of thyroid cancer called hurthle cell (about 400 cases of it in the medical literature). my prognosis is pretty good, but it is a lonely feeling having such a rare disease. is there anyone out there with hurthle cell cancer? IP: Logged |
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cpc Newbie Posts: 1 |
posted 04-08-2003 04:45 PM
Hello--Don't feel lonely. I have also had hurthle cell carcinoma. . I was completely malpracticed on/misdiagnosed by not only my original endocrinologist, but also the path dept at my local hospital--and subesquent endocriniolgists too--The FNA samples had the Hurthle cells in them, but the docs ignored it, told me surgery was unnecessary etc etc Eventually I got different and wonderful docs. I have done a lot of research on HCC. My surgeon is brilliant and incredibly nice--Orlo Clark in San Francicsio. I had a complete thyroidectomy in 1994 at UCSF. My tumor was the subject of an article in Thyroid magazine because it is an oddball even for HCC tumors--it was "hot" (they're usually cold)and it has a unique genetic structure--they analyzed the genetic material. You are right re there's very little in the medical literature about HCC. I come from a small city so I had to go to San Francisco to get decent medical advice--it saved my life. --CPC [This message has been edited by moderator2 (edited 04-08-2003).] IP: Logged |
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nancyo Junior Member Posts: 7 |
posted 06-02-2003 12:14 PM
I also have hurthle cell cancer. I had a total thyroidectomy this month. I've read everything about the subject I can get to on the web. Yep, it's a lonely feeling. I guess I'm lucky because mine was caught early, but the ablative radioactive iodine caught some activity in a couple of lymph nodes. So now I don't know what to think. How are you dealing with your feelings about all of this? I'm finally out of the smile on your face everything will be OK phase, and suddenly into "What? Why me..?" phase. I'm trying to mentally kick myself out of this. Suggestions? IP: Logged |
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wltyson Newbie Posts: 1 |
posted 07-09-2003 11:18 PM
Our daughter just found out that she needs to have a second surgery to remove the rest of her thyroid due to finding that she has hurthle cell carcinoma. She had her first surgery the later part of June 2003. The biopsy was sent to Italy for analysis by a thyroid specialist. His recommendation is that the rest of her thyroid be removed and begin radioactive iodine treatment immediately. She is 27 years old, there is no family history that we are aware regarding thyroid cancer. It is somewhat a shock to her whole family. The good news is that her younger age is in favor of a good recovery, as far as we know now. IP: Logged |
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