Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

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

@bfrank, I moved your post to this existing discussion about Hurthle cell cancer.
- Anyone here with Hurthle Cell Carcinoma?https://connect.mayoclinic.org/discussion/anyone-here-with-hurthle-cell-carcinoma/
I did this so you can read the posts from others and connect easily with members like @koh @cnicole @traceyjhp @susanau.

BFrank, I'm sorry to hear that your husband continues to discover new areas of spread and that hurthle cancer cells have now been discovered in his bones. What treatment options are available for bone mets in his case?

Hi,
I was diagnosed with Hurthle Cell Carcinoma after having a large nodule removed. I had a partial thyroidectomy (with most of the Isthmus) and 1 Parathyroid removed (parathyroid turned out to be benign). I feel like the surgeon just did the surgery and never checked back on things. I had to make several requests to be seen because I had some type of infection (they kept telling me to call my doctor and my doctor told me to contact the hospital.) When I finally got in to see the surgeon, he heard the cough and gave me a prescription… I started to feel better within a few hours. His follow-up is in 1 year.
The jury is out on the endocrinologist. She prefers telehealth, however after getting the runaround (telling me to go to my doctor and my doctor said he thought it was related to the surgery), I insisted on seeing her in person. The endocrinologist, from the hospital too, seemed hostile when she first walked in the room and her statements seemed dismissive. However, during the course of speaking with her she got to hear the terrible cough I was dealing with and her whole demeanor changed. She informed me that people who have thyroidectomy often have trouble with GERD and she thought this might be what was happening. Since I have a long history with GERD, I would have thought this information would have been shared earlier. The endocrinologist made several recommendations on what I should do and told me to go to my GI….this was helpful. My GI confirmed the issue with the extreme cough, swelling in my throat and pain as a result of the reflux. I started a prescription and things improved. Unfortunately, I do not tolerate the medication well so I take it for awhile and then have to stop for awhile….I will be starting it again soon but the cough is a lot better.
The endocrinologist had stated that I should have a repeat blood test in a month, which I just had. Out of the 9 items they tested in the past, she tested 2. I inquired about this and she added 3 more blood tests. I have issues when a doctor tells me what they are going to do to monitor something and then they do not do what they had said they would be doing.
I have not been feeling well and still have a lump in my throat, pain in my neck when I tuck my chin; and sometimes it goes up to my jaw and ear. I also have a swollen gland behind my ear. After going back and forth through the portal asking about the blood test, I got a call from the nurse saying the doctor thought I should start taking Synthroid and she will refer me to a neurologist. I asked why I would start Synthroid before having a complete blood test and why I should see a neurologist for a lump in my throat. I was then given a telehealth appointment, however when I asked how the doctor would be able to assess the lump in my throat by telehealth, they gave me an in person appointment. Yesterday, I saw the endocrinologist and once again, she appeared agitated that I was there. The endocrinologist walked in with arms crossed and said, “What can I do for you?” Once again, the appointment appeared to start out negatively. I told her I wasn’t feeling well and I had some questions about my follow-up. She started out with a long monologue with how she was following up and all the tests I have had done (bloodwork and PET scan) and by telling me about the bloodwork issue and how she didn’t feel it was necessary to do all the tests. She stated that she had only done all of the bloodtests last month as a favor to me…hmm.? She seemed to feel this oversight was not necessary. I described the pain in my neck and thought she should feel it to see what I was talking about. She felt the lump and seemed to have a change in tone. She said she did not think it was related to the thyroid and that it seemed like it might be my salivary gland. She said she could order a CT scan and a ultrasound to check on things so we are sure and ordered the tests. She said she wanted me to start Synthroid due to low TSH and “maybe I would feel better, or , it might be something else,” (I think she thinks I am just a constant whiner.) She discussed the various medications for thyroid Levothyroxine, Synthroid, etc and how it can be difficult to get the right balance. I asked about trying the medication for a month or two and then see if my thyroid starts working right, however she has not really seen that working for people (I will decide in a month if I will bring it up again. 🙂 The doctors demeanor at the end of the appointment seemed less agitated and more concerned with investigations what I had mentioned (she could feel the lump I had described).

It is very hard to know what is considered “normal,” for Hurthle Cell Carcinoma. Is it a situation where you wait and see if it shows up somewhere else? Or do you monitor through tests and scans to catch things early?
Good luck!