Looks like it's back.

flygirlc
flygirlc Member Posts: 30 Member
in Thyroid Cancer #1

So I had a TT and partial neck dissection in May 2008, papilary with a folicular variant, 20 lymph nodes removed, 5 positive for cancer. 7 weeks of ebrt and then RAI 131. Had 2 clean follow up scans and bloodwork twice a year at first then once. Switched to the new blood tests last year that measure a much smaller level of thyroglobulin and had none detected. This year, for the first time ever I had bad dreams and was worried about my results, maybe since it was my 5 year clean check up. Nope. Have .05 whatever of thyroglobulin detected. The lowest possible level to detect but still, last year it was clean. Scheduled for LID and a scan and the thyrogen blood work in May (can't do it any sooner) but I feel in my heart that my cancer is back. I know I'll get through it again and I know it won't be as bad as last time, no ebrt for sure, but I'm just so angry. I was ready to move on with my life and I thought I was done with this. I feel like the finish line is moved. Maybe I'm jumping the gun but has anyone had a false reading on their thryoglobulin? Just venting and hoping maybe someone has experienced a false positive for this. I'm preparing for worst case scenario, which won't be as bad as what I've already gone through, but looking for a little ray of hope I guess.

Comments

  • amorriso
    amorriso Member Posts: 185
    #2
    Blood work

    My thyroglobin has never been below 5, yet my scans are clear. I would be estatic if mine were below 0!  I do have antibodies which affect the reliability of using the TG as an indicator. As my doctor explained it, the TG means that I have thyroid tissue/ cells remaining...not cancer. We moniter the levels every 6 months. Should it rise dramatically it would likely indicate a reoccurrence. It has been steady for 3 years. 

    I do neck ultrasound every 6 months and a PET scan once a year. All have been clear. 

    It could very well be your TG has always been at 0.05, but just not detectable with the tests they were using. I think getting the blood work done is the right thing.  Ask about getting your anti TG done as well.  The key is to watch those numbers over the next year and see if there is any change.

    But for now I really think you are ok.

  • flygirlc
    flygirlc Member Posts: 30 Member
    #3
    amorriso said:

    Blood work

    My thyroglobin has never been below 5, yet my scans are clear. I would be estatic if mine were below 0!  I do have antibodies which affect the reliability of using the TG as an indicator. As my doctor explained it, the TG means that I have thyroid tissue/ cells remaining...not cancer. We moniter the levels every 6 months. Should it rise dramatically it would likely indicate a reoccurrence. It has been steady for 3 years. 

    I do neck ultrasound every 6 months and a PET scan once a year. All have been clear. 

    It could very well be your TG has always been at 0.05, but just not detectable with the tests they were using. I think getting the blood work done is the right thing.  Ask about getting your anti TG done as well.  The key is to watch those numbers over the next year and see if there is any change.

    But for now I really think you are ok.

    Thank you

    Thank you amorriso for the encouragement. One of the reasons I'm  worried is because I had the new test last year, the more sensitive one, and it came back 0 or less than .05. It's the change that has me freaking out. I've had 2 clear ultra sounds and 2 clear PET scans so that's encouraging, just going to be a long couple months. I'm doing the tyrogen and blood work as well as an ultra sound and a PET scan so if it's there they will find it! At least I am doing the thyrogen shots this time, not going hypo. Thanks for the response, it helps to hear from someone who's been there and understands :-)

     

  • galinbakersfield
    galinbakersfield Member Posts: 23
    #4
    flygirlc said:

    Thank you

    Thank you amorriso for the encouragement. One of the reasons I'm  worried is because I had the new test last year, the more sensitive one, and it came back 0 or less than .05. It's the change that has me freaking out. I've had 2 clear ultra sounds and 2 clear PET scans so that's encouraging, just going to be a long couple months. I'm doing the tyrogen and blood work as well as an ultra sound and a PET scan so if it's there they will find it! At least I am doing the thyrogen shots this time, not going hypo. Thanks for the response, it helps to hear from someone who's been there and understands :-)

     

    Stimulated

    If you would like a more truer answer to your questions you could see if your Dr would not only do the blood test but do a stimulated blood test. It's a pain in the rear end believe me, but you either get off meds for one month or you get a shot if you qualify, and then they can get an exact number. I have a small spike in my TG and when we did the stimulated I went from .01 to a 15tg. Thats when they knew that the cancer was back. Stimulted is just where basically you don't take your meds to see if there is anything there waiting to get the "permission" to grow back. Hope this helps. 

  • flygirlc
    flygirlc Member Posts: 30 Member
    #5
    galinbakersfield said:

    Stimulated

    If you would like a more truer answer to your questions you could see if your Dr would not only do the blood test but do a stimulated blood test. It's a pain in the rear end believe me, but you either get off meds for one month or you get a shot if you qualify, and then they can get an exact number. I have a small spike in my TG and when we did the stimulated I went from .01 to a 15tg. Thats when they knew that the cancer was back. Stimulted is just where basically you don't take your meds to see if there is anything there waiting to get the "permission" to grow back. Hope this helps. 

    Thank you

    Thank you galinbakersfield, I believe am going to have the stimulated blood test as well in May when I do the scan. I went hypo last time but this time we are doing the thyrogen shots so I don't have to take off work to go off my meds and so I can to the extra lab tests. They have also scheduled me for an ultrasound so busy week. I am a little more calm about it this week than last week. I am sorry yours came back and I hope you are doing well.

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