Anyone here with Hurthle Cell (Oncocytic) Carcinoma?

@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!

Welcome, @susanau. I'm tagging @koh @cnicole @traceyjhp to bring them into the discussion to share their thoughts and experiences with you.

While I'm glad that you have specific diagnosis of hurthle cell cancer following the hemithyroidectomy, I'm sorry that you have to go back for a second surgery. Better to be safe though, right? Did you cancer team talk about further treatment after the second surgery? How is recovery going for you?

Metastatic Hurthle cell carcinoma - thyroid
My husband has had multiple surgeries, and rounds of radiation as recurrent or new areas with the disease have appeared. Now, over the past couple of years, he has been on a watch-and-wait regimen with tumors in his lungs and the upper neck carotid space, and most recently, a rib bone biopsy revealed positive for hurthle cell as well. Has anyone else here experienced hurthle cell thyroid cancer spreading to the bone?

Hi. I’ve just been diagnosed with hurthle cell cancer. Five months ago I found a lump in my neck. After a scan and a biopsy, a 5cm nodule was found. Two weeks ago I had a left hemithyroidectomy. Surgery went very well. The lump was tested and it was hurthle cell cancer. I now rquire surgery to remove the right side of my thyroid just in case there are any cancer cells present.

Thank you!

Nicole, cancer can spread in different ways:
- through the bloodstream or lymphatic system
- by growing into nearby healthy tissues
See this helpful article that explains more fully:
- How Cancer Spreads https://www.cancer.gov/types/metastatic-cancer

Hurthle cell carcinoma, which is a variant of follicular thyroid cancer, that can spread to regional lymph nodes. If they were negative, then there may not be reason to remove further lymph nodes at this time, but continue to monitor through regular follow-up appointments that include exams, blood tests, and maybe other tests to see if the cancer has come back.

Your questions are very good questions for which I can only share general answers. I encourage you to ask these same questions of your cancer team so that they can confirm more specifically about which lymph nodes were tested and are 2 nodes enough, as well as discuss your follow-up regimen. Share your concern about spread so that they can tell you about the plan.

Hi! Thank you for the great information. The surgeon said that he didn’t have to remove any lymph nodes. In the pathology report it says that two regional lymph nodes were tested and negative.

I believe there are quite a few lymph nodes in the neck. It sounds like the cancer would need to spread to a lymph node to be able to spread to another part of the body. Is that correct? My next question would be if only two regional lymph nodes were tested, is that sufficient or could it have moved to a non-regional lymph node to spread?

Thank you for your support and answers to these scary questions ❤️

Welcome @koh and @cnicole.
Koh, I can see that you, like @traceyjhp, are looking for experts specializing in Hurthle cell carcinoma. If Mayo Clinic might be an option for you, you can request an appointment at any of our 3 locations. Click this link to get started either using the online form or calling: http://mayocl.in/1mtmR63

Nicole, it is hard not to worry about the possibility of cancer spreading. Deep breath and one step at a time. (I know - easy for me to say, right?). It sounds like you had a successful thyroidectomy. Radioactive iodine therapy may be recommended after surgery as extra assurance that all cancer cells have been destroyed. Radioactive iodine therapy can help destroy any remaining any traces of cancer that may not be indicated on tests. This doesn't necessarily mean it has spread.

If there are traces of cancer in the lymph nodes that would be an indicator that it has started to spread beyond the thryoid gland. Did they also remove lymph nodes during the surgery?

I was just diagnosed, but it definitely feels like the doctors are guessing on how to treat this. So many unanswered questions. My case was nodule that first tested benign in 2019, no growth in 2020 or 2021 and grew 26% from 2021 to 2022. I had another biopsy that came back suspicious from Vanderbilt and a genetic lab. I had a full thyroidectomy and the pathology report came back as hurthle cell carcinoma. The surgeon mentioned maybe radioactive iodine, but I’ve read that this type of cancer has shown to spread to lung, brain and bones. I have no idea yet how they can determine if it did spread in the years that it was growing. My hope is that you are feeling well and receiving positive reports 🙂