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    Old 10-29-2008, 04:18 PM   #1
    blueskyrr1
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    hurthle cell carcinoma

    Hi, I am new to message boards but curious for feedback. Almost 1 year ago I had half my thyroid out with a tumor that supposedly was benign. Turned out to be minimally invasive hurthle cell carcinoma. The ENT who did my surgery and an oncologist that I got a second opinion from, both advised me to not proceed with a full thyroidectamy.

    They told me, being minimally invasive that I don't have to worry about it spreading to other body parts besides the neck. They said to moniter with ultrasounds for 5 years and if any growths in my neck then proceed. I had left it at that and for some reason now I am having some doubts.

    My doctors told me not to believe the info online that EVERYONE should proceed with full treatment right away. Any opinions?

     
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    Old 10-29-2008, 05:13 PM   #2
    Reece
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    Re: hurthle cell carcinoma

    ok, here are my thoughts---I had pappillary thyroid cancer 3.5 yrs ago, full thyroidectomy, and RAI to kill off any thyroid cells, and now my tsh is suppressed to reduce the chances of a recurrence---the full spectrum of treatment, yet I had pappillary, the least likely to spread.

    If you really trust your doctors, and they are at a good hospital (teaching/university level) that's fine. Thyroid cancer in general is not that agressive, so if you are being monitored very closely, and your tsh is suppressed, that's fine.

    However, the reality is that oncologists are not really that well versed in thyroid cancer, and most ENT's don't manage it either. It is usually, in the US, the endocronologist that is the manager---oncologist specifically for thyroid cancer, some people use a radiation oncologist though.

    Hurthle cell thyroid cancer is not as "well differentiated" as pappillary, so if it does spread (and it is a bit more likely to spread) it's a little harder to treat with RAI. Pappillary spreads in the neck, hurthle is usually the neck, but you really don't want it to start spreading, because then it's getting harder to control.

    If you are having second thoughts, if you don't have an endocronologist, I would get one, if not, I would get a second opinion. I would look for one at a major university hospital, or a cancer hospital, and when I called to make the appointment, I would ask specifically if the dr. treats many thyroid cancer patients.

    I would at the very least, no matter how tiny that cancer was, consider removing the rest of the thyroid if you are otherwise healthy---you don't know what's lurking in the rest of the thyroid without taking it out.

    If you are having doubts, it's worth checking it out with another opinion. My endo. manages me very carefully, I visit every four months, and have ultrasounds, and it makes me feel comfortable that he's taking care of it, so I don't have to worry----I think you need that kind of confidence in this case.

     
    Old 10-30-2008, 12:31 PM   #3
    blueskyrr1
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    Re: hurthle cell carcinoma

    Thanks so much for your opinion, I really appriciate it. I am actually now going to seriously consider going for that third opinion. Actually, the doc. that I go to said they don't believe in TSH supression and that most do but actually its not really needed. So now that gives me a little more doubt enough that I should check this with another doctor, probably an endocrinolgyst.

    And to clarify, I didn't end up needing any thyroid meds just having a lobectomy and my doc. told me that even with that, most doctors put people on tsh suppression to stop recurrance but that he didn't believe it was necessary.

    If there is anyone else with more feedback I would really appreciate it.

    Last edited by blueskyrr1; 11-01-2008 at 11:53 AM.

     
    Old 10-31-2008, 05:53 PM   #4
    cg01
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    Smile Re: hurthle cell carcinoma

    I had a "huge" goiter than was growing downward and had a TT done approx 3 years ago. Was biopsied and came back benign but endo could not guarantee that the nodules that were growing downward and pushing on my trachea were benign since that area could not be biopsied. To be on the safe side my entire thyroid was removed per the recommendation of both my endo and surgeon and I very happy that I chose that route since results came back as minimally invasive huertle cell carcinoma just as you have. According to the surgeon it was only in that one nodule and did not even invade the rest of my thyroid. Chose not to have RAI as recommended by the surgeon but am being closely monitored every 6 mos with blood work, scans, etc. So far, has not returned and am feeling fine. I am on 125 mg Synthroid and have no effects at all from taking it.
    Just want to let you know that I never regretted having my entire thyroid out since, aside from the fact that my neck was huge, I do not have to worry about the other side at all. TSH is being kept low as also recommended by my surgeon to prevent reoccurrence.
    I can only speak from my experience but I never regretted having my entire thryoid removed and I am feeling fine and have no problem with taking the daily dose of Synthroid. I am surprised that your doctor indicated that keeping the TSH low is not important.
    Of course, only you can make this decision but to me it would be worth having the surgery for removal of the other side of your thyroid if, for nothing else, peace of mind.

    Carole

     
    Old 11-02-2008, 08:07 PM   #5
    cg01
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    Re: hurthle cell carcinoma

    I, too, had the same decision to make regarding RAI treatment. I was very torn about going through with it or not. I read alot about huertle cell and it seemed that this type of cancer did not uptake the RAI treatment as successfully as other forms of thyroid cancer. I was also concerned about the side effects of RAI now and in the future. I spoke to both my endo and surgeon. My endo told me that the final decision was up to me, of course. However, my surgeon did not think it was necessary since all was removed and the pathology report indicated that the cancer was in that cell only and did not even invade the thyroid. He was very confident that as long as I was monitored closely with scans and blood work - if the cancer did reoccur - it would be caught early enough to have the RAI done if it was absolutely necessary. My surgeon is one of the best and I trusted his opinion completely.

    I am now 3 years post-surgery and I go to my endo every 6 mos for blood work and scans and so far, the cancer has not reappeared and he is very pleased as I am. I am on Synthroid .125 mg and so far my tsh and tg levels are exactly where my doctor wants them to be.

    However, you will have to make this decision for yourself even though it is a very difficult one to make. I was very happy with my decision but, of course, everyone is different. It is very important to speak with your endo and surgeon too regarding this.

    I wish you the best of luck in whatever you decide to do.

     
    Old 11-02-2008, 09:22 PM   #6
    blueskyrr1
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    Re: hurthle cell carcinoma

    so, cg01 was your great doc. that you trust adament about taking the full thyroid? Or were they just leaving it totally up to you, leaning toward not doing the full thyroidectomy?

     
    Old 11-03-2008, 04:28 PM   #7
    cg01
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    Re: hurthle cell carcinoma

    It was my surgeon's suggestion to remove my entire thyroid. The right side of my thyroid had a very large goiter and small nodules were felt on my left side. The doctor advised to have it completely removed since there was a very good chance that the nodules on the left side would grow and I would have to return for another surgery in the near future. I didn't want to return for a second operation - one time was enough. Also, my doctor said it would be easier to regulate my meds without a thyroid. Luckily, this was the right decision since cancer was found on the right side and I would have had to return to have the left side removed immediately. I never regretted having the total thyroidectomy and feel much better than I did when I had the huge goiter.
    I also haven't had any difficulty with regulating my meds.
    Please ask me if you have any other questions that I could help you with. This board was a "lifesaver" for me and I always appreciated all the help people offered here.

     
    Old 11-03-2008, 08:27 PM   #8
    blueskyrr1
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    Re: hurthle cell carcinoma

    I am starting to wonder if there is anyone out there like me, advised to leave the other half of my thyroid alone and moniter it once a year. It was minmally invasive hurthle cell cancer, but still have not yet heard from anyone in my shoes.

    I do have another question. I know they say it doesn't cause alot of symptoms, but did anyone have sympyoms? I have always had hyperthiroid symptoms and when my tomor was found and I was told benign, I was thrilled that I finally figured out I had athyroid prob. to explain this. Low and behold the blood was fine, never hypo or hyper. Just the cancer. So just curious if anyone else had a similar experiance? Thanks again so much!!

     
    Old 12-05-2008, 06:21 AM   #9
    Martin K
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    Re: hurthle cell carcinoma

    Quote:
    Originally Posted by blueskyrr1 View Post
    I am starting to wonder if there is anyone out there like me, advised to leave the other half of my thyroid alone and moniter it once a year. It was minmally invasive hurthle cell cancer, but still have not yet heard from anyone in my shoes.

    I do have another question. I know they say it doesn't cause alot of symptoms, but did anyone have sympyoms? I have always had hyperthiroid symptoms and when my tomor was found and I was told benign, I was thrilled that I finally figured out I had athyroid prob. to explain this. Low and behold the blood was fine, never hypo or hyper. Just the cancer. So just curious if anyone else had a similar experiance? Thanks again so much!!
    I'm amazed anyone would advise you to not have a full thyroidectomy once cancer has been found. I had follicular, minimally invasive, and was told I had to have a completion of the thyroidectomy (i.e., 2nd surgery to remove the rest of my thyroid) -- there was no question or doubt about it, according to the endocrinologists I saw. Have the surgery, and best of luck.

     
    Old 12-05-2008, 06:22 AM   #10
    Martin K
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    Re: hurthle cell carcinoma

    By the way, it's completely normal not to have any symptoms from ThyCa.

     
    Old 12-05-2008, 10:42 AM   #11
    blueskyrr1
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    Re: hurthle cell carcinoma

    Thanks MK I appriciate the feedback. Did you do the radioiodine? If so, how did it go for you?

     
    Old 12-05-2008, 12:01 PM   #12
    osteoblast
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    Re: hurthle cell carcinoma

    Bluesky-I too am in the seattle area and found as you did that the ENT I went to only wanted to do partial but she said that if cancer found in that lobe while I was on the table ONLY then would she do the total. I wanted a total , since one side has large nodule 3cm and other side has several small nodules.Then my endo told me that sometimes they cannot find the cancer during the surgery--when lobe sent to pathology because they can't test every little section . She now is recommending total for me.I decided not to have surgery in seattle. I am going to go to Mayo in MN.Maybe there they will only agree to partial --I will have to see what they say but my endo wrote a letter saying she recommends total.
    In my experience the surgeons want to do just partial because of worry about parathyroid damage or vocal cord injury/damage. But , it there is cancer then they generally will agree to total.
    Did you go to the woman ENT at Polyclinic??I really did not like her at all.Very cold. She did a lip biopsy on me and treated me like a car at a repair shop. I have heard she is an excellent surgeon but ...not for me.
    There is a great chapter of the Thyroid Cancer Survivor Assn. in Seattle and I was in contact with them. They put me in touch with about 5 different people who had gone to the drs. I was considering for surgery . I got some excellent info.

     
    Old 12-08-2008, 09:35 AM   #13
    Martin K
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    Re: hurthle cell carcinoma

    Quote:
    Originally Posted by blueskyrr1 View Post
    Thanks MK I appriciate the feedback. Did you do the radioiodine? If so, how did it go for you?
    I had the RAI treatment less than a year ago (no fun, especially as you have to keep your distance from your loved ones for about a week, but at least it's only one night in the hospital). So far, at least, my blood tests are looking good. (knock on wood.) I'm also on a very high dose of synthroid to suppress any thyroid cell action (if any cells remain).

    I guess the main thing is to make sure you have a very experienced, top-notch endocrinologist.

     
    Old 12-26-2008, 09:48 AM   #14
    nick stockton
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    Post Re: hurthle cell carcinoma

    newbie made a mistke on first respoe

    Last edited by nick stockton; 12-26-2008 at 10:03 AM. Reason: not me

     
    Old 12-26-2008, 09:53 AM   #15
    nick stockton
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    Re: hurthle cell carcinoma

    I was told that hurthle cell carcinma is more aggressive than other thyroid cancers and
    is best to do a total thyroid removal ant the RI reatment will remove any residul thyroid and hopefully get rid rid of the hurthle cell if not will help keep monitoring if there is any more cancer.

     
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