Thyroid cancer. Thyroglobulin Levels

TT99dcraig
TT99dcraig Member Posts: 3
in Thyroid Cancer #1
Diagnosed 18 months ago with papillary thyroid cancer. Radical neck disection, removing thyroid, neck muscle tissue, and 29 lymph nodes in June 2010. Just finished my third round of I-131 in August 2011. But my thyroglobulin levels are trending up. 25 in October 2010, 24 in January, 25 in March 2011, 35 in June 2011, and finally 48.3 just last week November 2011.

What are my options? The total amount of radioactive iodine that I have ingested is 450. My doctor wants me to wait another 3 months and retake thyroglobulin test. Then he suggests a PET scan possibly.

What are the choices that I have, if any?

Comments

  • alapah
    alapah Member Posts: 287
    #2
    I assume your neck
    I assume your neck ultrasounds show nothing unusual. It is possible that the remaining thyroid cells in your body are no longer avid for iodine which means that they do not 'suck up' iodine, radioactive or otherwise. When that happens, RAI has no effect. I am no longer avid so RAI is not an option for me. I had rising Tg with clear ultrasounds and clear WBS and the next step for me was a PET/CT combo. I think that is a good recommendation. I'd push for it if your insurance balks. best to you.
  • TT99dcraig
    TT99dcraig Member Posts: 3
    #3
    alapah said:

    I assume your neck
    I assume your neck ultrasounds show nothing unusual. It is possible that the remaining thyroid cells in your body are no longer avid for iodine which means that they do not 'suck up' iodine, radioactive or otherwise. When that happens, RAI has no effect. I am no longer avid so RAI is not an option for me. I had rising Tg with clear ultrasounds and clear WBS and the next step for me was a PET/CT combo. I think that is a good recommendation. I'd push for it if your insurance balks. best to you.

    Thanks, it is good to know
    Thanks, it is good to know that I am not alone out there. I like my doctor, but it seems like they like to keep you in the dark, until something does not happen as they expect. The doctors tell you only one step ahead. One year after the surgery, I told my ENT surgeon that I was surprised that I was still dealing with this cancer and he said "well, you know you had stage 4 cancer!" That was the first time anybody ever used that terminology with me. Before it was always "well, it is a good cancer." I am just frustrated as I am an airline pilot and the FAA will not let me fly until I am "cancer-free." So on top of having this cancer I have not been working for a year and a half. I am not concerned about my health, just the financial situation for my family. Just venting.
  • amorriso
    amorriso Member Posts: 185
    #4
    PET scan
    I would push for the PET scan. They are excellent at finding tumors in the body. I have had two - both of which pin pointed areas in my neck where the lymph nodes were still affected.

    Perhaps start getting the appointment set up now -

    Good luck
  • alapah
    alapah Member Posts: 287
    #5
    TT99dcraig said:

    Thanks, it is good to know
    Thanks, it is good to know that I am not alone out there. I like my doctor, but it seems like they like to keep you in the dark, until something does not happen as they expect. The doctors tell you only one step ahead. One year after the surgery, I told my ENT surgeon that I was surprised that I was still dealing with this cancer and he said "well, you know you had stage 4 cancer!" That was the first time anybody ever used that terminology with me. Before it was always "well, it is a good cancer." I am just frustrated as I am an airline pilot and the FAA will not let me fly until I am "cancer-free." So on top of having this cancer I have not been working for a year and a half. I am not concerned about my health, just the financial situation for my family. Just venting.

    feel free to vent
    we all do now and then and this is an ok place to do so. does your endocrinologist specialize in thyroid cancer? it may be worth it to find someone who does. they may not use the term 'specialize' but i guess what i mean is someone who is well informed about thyca and not just the run of the mill cases. my endo happens to be pretty well informed and also connected to a network of specialists in other states who focus on thyca.

    that's a bummer about your profession requiring a cancer-free tag. i hadn't thought about that before, as my job doesn't have that sort of requirement. wish i had something to offer in terms of advice on that front but i don't, unfortunately. aside from affirming that you should feel free to vent here as needed.
    e
  • sunnyaz
    sunnyaz Member Posts: 582
    #6
    TT99dcraig said:

    Thanks, it is good to know
    Thanks, it is good to know that I am not alone out there. I like my doctor, but it seems like they like to keep you in the dark, until something does not happen as they expect. The doctors tell you only one step ahead. One year after the surgery, I told my ENT surgeon that I was surprised that I was still dealing with this cancer and he said "well, you know you had stage 4 cancer!" That was the first time anybody ever used that terminology with me. Before it was always "well, it is a good cancer." I am just frustrated as I am an airline pilot and the FAA will not let me fly until I am "cancer-free." So on top of having this cancer I have not been working for a year and a half. I am not concerned about my health, just the financial situation for my family. Just venting.

    Push for the PET scan
    First, I would push for the PET scan and find out where the cancer has come back, it sounds like it has or your Tg antibodies are on the rise because of so much RAI. Second, dump your ENT and get an Oncologist that specializes in Endocrine Cancer. ENT's don't have a clue about cancer, how it spreads and should hand it over to an Oncologist as soon as there are complications. I don't know where you live but there are plenty of Endocrinologist-Oncologists in the country that are very good at what they do. I hope you get some answers soon.
    Blessings,
    Julie-SunnyAZ
  • TT99dcraig
    TT99dcraig Member Posts: 3
    #7
    sunnyaz said:

    Push for the PET scan
    First, I would push for the PET scan and find out where the cancer has come back, it sounds like it has or your Tg antibodies are on the rise because of so much RAI. Second, dump your ENT and get an Oncologist that specializes in Endocrine Cancer. ENT's don't have a clue about cancer, how it spreads and should hand it over to an Oncologist as soon as there are complications. I don't know where you live but there are plenty of Endocrinologist-Oncologists in the country that are very good at what they do. I hope you get some answers soon.
    Blessings,
    Julie-SunnyAZ

    Thanks. My next door
    Thanks. My next door neighbor is an oncologist and my wife talked to him tonight. He says stay the course for the next three months, but get the PET scan in January. From there see what options are available. Thanks for Your thoughts.

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