Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

You stated that HCC will spread is just a matter of time.
Can you point to where you heard or read this? My doctor believe HCC is fully curable. I’m not disputing your comment,I’m just trying to fully understand what I’m up against. There is so much information and i can’t figure out the truth. Hang in there!

I'm new to the group and just wondering if anyone else has been diagnosed with Hurthle Cell Carcinoma. I had a 6.5cm tumor and 15 lymph nodes removed in late September, and today I just had radioactive iodine ablation. It is my understanding that this may or may not work on this type of cancer however, I understand this treatment may be positive to kill any remaining thyroid tissues. This is a ton to digest. Any advice on what I should be reading to better educate myself on this cancer so I can be aggressive in treating this.

This is a condensed version of my husband's experience. His was first discovered in September 2005 at age 34 during a procedure to remove what they suspected was a "cyst" in his neck. He had a multinodular mass measuring 9.2 x 9.0 x 2.4 cm, later identified as Hurthle Cell. He had two surgical procedures; the second was quite extensive as the tumor was invasive to strap muscles and the esophagus. Thyroplasty was performed to improve damage to the voice box, followed by 28 radiation treatments. In December '09, he had a recurrence requiring another extensive surgery/neck dissection and radioactive iodine therapy. In 2011 they found that the HCC spread to his lungs, and they did bilateral radiation. In September 2015, another recurrence in the neck required another 33 doses of radiation. Since then, they have been monitoring tumors in the lungs and the area of the internal carotid artery. Because of repeated radiation to the areas as well as multiple surgical procedures to the neck, they are just watching the areas. They will not treat it unless it becomes vital.
The most recent biopsy last month confirmed HCC in the rib bone. As of now, we believe the plan will be to do some type of pin-point radiation to the bone.
In these past 17 years, he's never gone more than six months without an in-person appointment and scans (they would rotate between PET & MRI and always did an ultrasound) with his doctor.
Ask a lot of questions and report anything that is even slightly out of the norm. When his cancer recurrence was discovered in 2015, it was because I brought up to the doctor during his checkup that my husband mentioned to me that his tongue felt twitchy and he couldn't roll it. This led to additional scans that day and the findings of tumor.

Did you ask for another opinion
Me l got carcinoma in my write lob and l
Have a lobectomie one month ago and now I’m waiting for the oncologist to call me if l
Need chimo or radiation or nothing but it’s scary and l understand you me l
Try to be strong for my children and me be it’s hard but l stay positive
Good luck stay positive

I am sorry to hear the HCC spread beyond the thyroid. I am sure this is a fear for many of us. I am so new at this but it feels like the first line of treatment is to treat HCC like any other thyroid cancer and see what happens. I feel as though, as part of my journey, I need to at least look for a early treatment plan as opposed to waiting for the spread to happen. I have heard HCC is aggressive, it will spread, it is just a matter of when and where. They won't say it in those words but the three Endocrinologist do not see any reason to involve an Oncologist and I am not understanding why an Oncologist would not be part of the team. My diagnosis was 6.5 cm with evidence of vascular invasion.

After my husband's surgery and the discovery of Hurthle Cell, he was sent to an endocrinologist. If you happen to have access to Mayo Clinic in Rochester, MN, Dr. John C. Morris is excellent. One of his areas of specialty is Hurthle Cell. We saw Dr. Morris for several years until my husband's cancer spread beyond the thyroid, and at that time, he referred him to an oncologist.

Just diagnosed with Hurthle Cell carcinoma 3 weeks ago as a result of a total thyroidectomy. 6.5 cm, Possible vascular invasion. I am 73, have always been very healthy. I have an appointment with a endocrinologist but is that the best/first line of treatment? Where do we start? Who do we see? Do we have options? I think I heard the “C” word and my brain checked out…. My primary doctor had to Google Hurthle Cell…. So he wasn’t much help.

I was diagnosed with Hurthle Cell Carcinoma in July…What follow up tests do people usually have to monitor? How often? My doctor ran a TSH and T4 but did not do a complete blood test….should I request a full blood test? I think it is odd that’s these two blood tests are all that is necessary to monitor.

At this point, we aren't totally sure. When his dr called with the biopsy results, they didn't think it required any amount of urgency but said they would discuss treating now if that's what my husband wanted to do. He goes along with what is being suggested (wait). We know they don't want to treat what's currently in the lungs and neck/head area unless they absolutely have no choice because both areas have each already had 2 rounds of radiation, and he's had 3 surgeries on the neck. Hence the "watch-and-wait" plan he's on. Now that it's moved into his bone, I have a new level of concern. That's why I'm curious to know if anyone else here has had this type of cancer spread to the bones.

My second surgery is scheduled for 7th December
My surgeon spoke about taking one thyroid tablet daily for the rest of my life. Easy
Yearly checkup with my doctor to do blood test & do a ultrasound