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EndocrineWeb Community Advice

Hurthle Cell Thyroid Cancer

From: cjc - 7 years 9 weeks ago

I am waiting for my TSH's to come down from 13 to 4 before my doctor will operate on my thyroid for hurthle cell neoplasm.
I have known about the nodule for 14 weeks now. It was measured at 11mm back then. Starting to get irregular heat beats a few hours daily after taking tablets to bring down TSH level which does not help my nerves. I have read just about everything I can get my hands and almost believe I can do the operation myself but also I can not find any written information on what is a "safe" TSH reading for the doctor to do the operation right now.
My other concern is that I have beaten cancer twice before and that is because I have been operated on with a very early identification of the growths before the cancers could go elsewhere in my body. This time, I don't know if the doctor justs wants a successful operation first up as he said if he finds it has broken out after the operation with pathology test, he will not be doing the next operation (removal of the other half of the thyroid).
Is there anyone out there who has had a similar situation? Is there any stats. on this situation that I have not seen yet? Is there a surgeon who can see if this doctor is correct in delaying?

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2 Responses

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I don't know if this is a first, but I am going to answer my own comment. I can't believe it is nearly 6 weeks ago now since I wrote last.
I was at a very low point when I wrote it. I can say after talking to a specialist nurse from the Cancer Council of Australia and now armed with a better understanding of TSH & TR4 readings and stats. on balancing the thyroid before operations, I was able to calm down and wait out until my TSH reading was .05, 4 weeks later. She was also able to send me to other UK and USA sites for statistics on hurthle cells neoplasm.

It is 11 days since I had my half of the thyroid out carrying the hurthle cell neoplasm nodule. Because it had not broken out of its capsule and because the thyroxin tablets probably slowed down its feeding frenzy, the nodule had not grown any bigger than 11mm. The pathology report on the half of the thyroid removed looked awful at first but what it really was saying was just as well I had that side removed as it was full of hurthle cells.
The upshot to my saga is that I feel great now only 11 days after the operation. The operation for a 63 year old was a walk in the park and the stay in hospital was only over night. The thyroxin dose seems like it is about right,(50 & 75 alter.days) monitoring through blood tests should sort that out. I have to have ultrasounds every 6 months. I probably will not have the other side functioning in a few years as it is just limping along and will eventually die. Meantime, the ultrasounds will expose any formation of more hurthle cell nodules.
I know that I am not a doctors' average patient in today’s' times.
My EN&T specialist turned out to be just a poor communicator and under estimated me being over the hill in age as he said at the time that going to the internet for information was not smart, how wrong he was!
No one should ever feel alone in this world when you are frighten of dying through ignorance. Anyway the doctor just saw me as female and old and I guess his parents failed him with communication and bedside manners.
He really did a first rate job on the operation leaving after 10 days, a near invisible 5 inch scar.
I want to thank the great unknown out there for allowing me to write to you and God bless this site for being there in my time of need.

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I am very glad to hear that your surgery was a successful event for you! I am going under the knife in a few days. My story is all about serendipity. I went to work one morning about 4 weeks ago and felt like I was having a heart attack when another collegue came in to my room and saw that I was under stress, called the ambulance, rushed to hospital, blood pressure up to 220/150, intense pain in chest, and so on. The ekg came back perfect, my enzymes were perfect, no heart attack...was admitted to hospital and then had a CAT scan to take a look at my heart. By happenstance, the thyroid got in the picture by accident. And there she was. A "large nodule which measures 4.4 X 2.7 X 2.1 cm" and the other news was that another autoimmune disorder has come out of remission and is occupying my lungs. I felt like I was going to come unglued at the thought of waiting 2 months just to get in to see a surgeon. The surgeon got me in that week because of a cancellation. She wouldn't even go into the issue of removing the "nodule" that is about the size of two of my pinky fingers. But then referred me to a friend of hers who was an endocrinologist. I was told I had a 4 week wait for the appointment with the endocrinologist. As things turned out, there was a cancellation and I was in at the beginning of the week. I had educated myself enough to know that I would be having a FNA biopsy. After that, the endocrinologist sent me on my way and said, "See ya in 4 weeks." So, there I was again, FOUR weeks?! Are you kidding me? Then, I got the call, "You need to come in, NOW." The night before, my husband and I did not sleep well at all. I had weird dreams that I was sitting in the surgeon's waiting room watching an episode of "Gunsmoke." The waiting room in my dream was in a different order than when we were actually there. So, the next morning we set off on the hour long drive to see the endocrinologist. I had a feeling that it wasn't going to be a glad hand, out the door thing when they showed us into the office with no exam table and I am looking at models of thyroid glands with different cancer tumors. The doctor came in and told me that I had two options, surgery or a series of biopsies that would look for cancer "markers." I looked at her and then she said, "It will probably have to come out, even then. She then added that it was "a new protocol and that she was just learning about it.." I got into our car and called the surgeon, the receptionist answered the phone and said, "Can you be here by 11?" It was 10:30 and we got right over to the surgeons office,we walked into the waiting room and the first thing my husband said was, "They rearranged the furniture and the tv was on. Yes, it was an episode of "Gunsmoke." The surgeon went over all of the details of the surgery. We talked probabilities of cancer and in the end she said, "So, I'll see you for surgery in 3 weeks or so." I walked around the corner to the scheduler and she said, "How does this Tuesday sound?" I got checked in and am now 5 days out from the surgery. I make my salary with my voice and the biggest thing that I am worried about is that my voice might be a little more on the "whisky" side. I am making all of my arrangements to be out for the time that it takes for my voice to come back. Every step of the way, there has been a miracle around the corner. I just had to trust and do my homework. I think somebody up there likes me. Stay positive and always reach out for help!

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