• I was recently diagnosed with Hurthle cell carcinoma. My current dr wants me to have a surgery to remove my left thyroid lobe next week.

    Asked by Lili on Wednesday, November 21, 2012

    I was recently diagnosed with Hurthle cell carcinoma. My current dr wants me to have a surgery to remove my left thyroid lobe next week.

    I just had my right lobe removed last week. Today I asked my stage of cancer, he did not know. I asked if I have cancer, why my TSH value is normal. He did not give a satisfactory answer. I asked when he did the surgery on the right, did he check other organs, he said he did not know it was cancerous, he did not check. But he wants to do my left part. I don't know whether I should see another dr. I heard Mayo Clinic is the best place for cancer treatment. Is there anybody who has experience with Mayo Clinic Cancer Center and had a treatment of Thyroid cancer? Please help me with your experience. I would appreciate it indeed.

    16 Answers from the Community

    16 answers
    • Harry's Avatar
      Harry

      The Mayo Clinic is one of the very best cancer hospitals in the country. According to a US News and World Report story, M.D. Anderson in Houston is THE best, but the Mayo is way up there. If you are unhappy with your diagnosis or treatment, I urge you to get a second opinion and a place like the Mayo is the place to go for one.

      I wasn't treated at the Mayo so I can't give yo

      over 4 years ago
    • Harry's Avatar
      Harry

      Arrrggghhhh.....

      I love it when this keyboard does something like that.

      As I was saying, I can't give you my personal experiences at Mayo, but I've heard a lot of good. My mother was treated at the Cleveland Clinic, another cancer hospital on par with the Mayo and Anderson. I found the place a bit impersonal, but the treatment was outstanding.

      over 4 years ago
    • GregP_WN's Avatar
      GregP_WN

      Harry, do you remember the cell phone commercial that said "Hold up your finger, your using the wrong finger" Maybe that's you. I do that all the time too, hit the button and it's done.

      Thanks for handling this question.

      Greg P

      over 4 years ago
    • Harry's Avatar
      Harry

      Hi Greg,

      I probably did hit the wrong button, but I was using my laptop and the keyboard there pulls some pretty wierd stuff on its own.

      I enjoy helping when I can. In this case, it was fairly easy to see that Lili would benefit from a second opinion, and recommending the Mayo is an easy call. :-)

      over 4 years ago
    • carm's Avatar
      carm (Best Answer!)

      Hi Lill, Happy Thanksgiving to you. My name is Carm and I am an oncology nurse so maybe I can help clarify things for you. This type of thyroid disease is very rare and can't really be diagnosed that well with a biopsy because these cells are encapsulated. These cells are usually adenomatous or pre-cancerous but this particular disease has a high rate of metasasis. Usually looking at the cells they are determined cancerous by how much blood flow they get and by how rapid they divide and replicate. TSH usually drive it's growth so, even normal levels of TSH can be a detriment. Surgery is always the first line because the cells are encapsulated, it just makes sense to get them out. If not, post treatment recurrence rate is high, so it makes sense to have it removed surgically. After it is removed, recurrence is controlled with synthroid and your T4 levels are monitored. Not many places see this type of thyroid disease and even the big name cancer hospitals like Mayo or MD Anderson will suggest surgery to remove it. Best of luck, Carm.

      over 4 years ago
    • xxx19xxx's Avatar
      xxx19xxx

      HI LILI,
      I'M NOT AN EXPERT ON CANCER, ALTHOUGH i'VE BEEN WITH IT FOR ALMOST 6 MONTHS....HAD 33 RADIATION AND 7 CHEMO TREATMENTS......THIS DOCTOR YOU'RE WITH SOUNDS LIKE SOMETHING FROM A CIRCUS OR SESAME STREET. I WOULDN'T LET HIM COME NEAR ME WITH EVEN A THERMOMETER. I THINK IT'S TIME FOR ANOTHER DOCTOR TO LOOK AT YOU. I ALSO HEARD MAYO CLINIC IS VERY GOOD............EVEN BETTER, I HEAR MD ANDERSON CANCER CENTER IN HOUSTON, TEXAS IS RANKED EITHER 1ST OR 2ND IN THE COUNTRY. LIFE IS TOO SHORT.....WHAT IF THIS GUY MAKES ANOTHER ERROR, AND IT'S TOO LATE TO GO BACK AND FIX HIS MISTAKE?
      I WISH YOU THE BEST OF LUCK, LILY.

      over 4 years ago
    • vet613's Avatar
      vet613

      Lili,

      I have heard nothing but praise for the Mayo Clinic. In my own humble opinion, you owe it to yourself to see another Dr.. You owe it to yourself to get another opinion. So, while Mayo is very highly rated indeed so are many others. You could start by checking what other successful hospital, often a teaching hospital, is located near your home (if it is not already the Mayo (LOL)).

      My best wishes,
      Dick

      over 4 years ago
    • vet613's Avatar
      vet613

      Lili,

      I have heard nothing but praise for the Mayo Clinic. In my own humble opinion, you owe it to yourself to see another Dr.. You owe it to yourself to get another opinion. So, while Mayo is very highly rated indeed so are many others. You could start by checking what other successful hospital, often a teaching hospital, is located near your home (if it is not already the Mayo (LOL)).

      My best wishes,
      Dick

      over 4 years ago
    • vet613's Avatar
      vet613

      Lili,

      I have heard nothing but praise for the Mayo Clinic. In my own humble opinion, you owe it to yourself to see another Dr.. You owe it to yourself to get another opinion. So, while Mayo is very highly rated indeed so are many others. You could start by checking what other successful hospital, often a teaching hospital, is located near your home (if it is not already the Mayo (LOL)).

      My best wishes,
      Dick

      over 4 years ago
    • Lindy's Avatar
      Lindy

      You must be very frustrated with the doctor. Get another opinion. I don't know about the Mayo Clinic, several top cancer centers in America. Houston has one, Johns Hopkins is another. Hope you get some feed back from those who have been to a top center. Good to know specifically why they are top rated, they do sometimes "cook" their stats.

      over 4 years ago
    • geekling's Avatar
      geekling

      There is no harm and no foul in getting a second or even a third opinion. Just make sure the professional opinions are unrelated to each other. Everyone seems to be in agreement about the quality of your choice.

      Despite what the nurse answered, I believe it is not only your right but your personal duty to get another opinion when you no longer trust your doctor. If a doc can't answer a question, he can either explain why the question is unreasonable or offer to find an answer and get back to you. Your chart is on a wall outside of the room in which the doctor sees you. He ought to, at minimum, be able to call you by name and talk to you. He has lots of patients. You only have one you and one thyroid.

      When I decided to use an oncologist, I interviewed six of them before settling on a particular one.

      I believe that by formulating your question, you are already stating that you do not have enough faith in your doctor. Although it may be a medically correct solution in terms of the finest western medicine, I do not understand why doctors prefer to cut away than to fix. I'm not saying that you might not be better off without your offending thyroid but that you can't replace it, won't grow another, the synthetic or natural pills are less than perfect (although pretty good once a proper dosage is determined) and there might be another way that this current "I Don't Know" doctor simply doesn't know about.

      Best wishes and immense good luck.

      over 4 years ago
    • Harry's Avatar
      Harry

      The way I see it, a second opinion is always a reasonable choice whether or not one is dissatisfied with the first opinion. If one isn't satisfied then a second opinion is an excellent choice. Maybe the second opinion confims everything the first opinion says. Maybe uncertainty is a function of the cancer itself and the first doctor is just being honest. Whatever. The second opinion, in that case, will give the patient confidence that they are getting approprite treatment.

      As for location, if you are getting a second opinion, you might as well go to one of the major centers. Mayo is certainly one of those and is at a level that one really can't do better. (US News and World Report is in the business of putting the hospitals in a specific order, but there really isn't that much difference between the top dozen or two.) Lili indicates that she is in Lenexa, KS, a suburb of Kansas City. The Mayo is one of the closest of the major centers.

      over 4 years ago
    • Lili's Avatar
      Lili

      Thank you for all your replies which warm my heart! When I registered on this site, it asked if I would like to receive email when someone anwers my question and I checked yes. Over the past days, I have been checking my emails and did not see any replies. Today when I revisited this site, I am so touched my your advice and encouragement. Thank you so much!
      On Thanksgiving day, I filled out an appt form on Mayo Clinic website and the next day they called me and set up an appt with one of endos on early Dec. I am very impressed with their quick response and wholeheartedly would like to go there.
      Thanks for your professional insight, carm!

      over 4 years ago
    • Tamy's Avatar
      Tamy

      Hi Lilli, I too have HCC. At first it was called benign by Mayo, fast forward a year plus and I went MDAnderson, just was bugging and wanted the exports on Medullary Thyca on board. Well Dr Sherman re did the pathology and found out I did/do have HCC. So in my opinion MDAnderson is THE place. I live north of ya in Nebraska so, a little bit of a trip but well worth it. Hope this helps.

      about 3 years ago
    • Tamy's Avatar
      Tamy

      Was wondering what you ever did Lilli

      about 3 years ago
    • Lili's Avatar
      Lili

      I had my second surgery done in Mayo last July and have been on Levothyroxine since. In January I went back to Mayo for after surgery checkup and everything was fine according to the dr there. After my second surgery, my menstruation was messed up (severe pain) mainly because of my body's reaction to the removal of thyroid (that is my personal opinion, because my endocrinologist in Mayo did not think there was a correlation). Anyway, I am getting better and better with my menstruation after 4 or 5 months and my body is recovering gradually. Thanks for your information about MDAnderson.

      about 3 years ago

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