has anyone chosen not to undergo the "year after" RAI treatment?

ibeatcanser
ibeatcanser Member Posts: 47
edited March 2014 in Thyroid Cancer #1
I'm approaching my first year of diagnosis/surgery/RAI and would like to know if anyone chose not to undergo the routine "first year after" RAI treatment"?

My bloodwork levels are in the area that my endo wants them to be and he also told me that if they keep up those numbers, next year I would just have to do ultrasounds.

My first RAI wrecked havoc on my body and it took months for me to return to some level of 'normal'

what are the pros and cons?


Thank you in advance...

Comments

  • nasher
    nasher Member Posts: 505 Member
    #2
    ???
    talking to my friends who are much farther along than 1 year and um.. what ..

    routine "first year after" RAI treatment"

    none of them have heard of another RAI treatment.. they have said that they underwent a full set of CT scans about 1 year out but none of them mentioned any more radiation.

    if its just a series of CT scans or such i would definatly do it

    if its something dealing with MORE radiation .. well i dont know.

    corse i am only 5 months out and i was told at about 1 year out they would do CT scans again
  • alapah
    alapah Member Posts: 287
    #3
    do you mean tracer dose?
    Often patients who had an ablative dose of RAI will follow up 6 months later by going hypo (or on Thyrogen injections) and receive a small dose (mine was something like 5mci) of I-131 or I-123 to see if any cells absorb it and light up on the body scan. If so, it may then be necessary to do another round of a higher ablation dose of RAI. It might be that if you have no Tg antibodies and your Tg is undetectable, the docs may not recommend or require that you have this sort of follow up dose and scan at 6 months. The body scan done with RAI doses is doesn't expose you to radiation in itself - of course, the RAI is radioactive...
  • ibeatcanser
    ibeatcanser Member Posts: 47
    #4
    alapah said:

    do you mean tracer dose?
    Often patients who had an ablative dose of RAI will follow up 6 months later by going hypo (or on Thyrogen injections) and receive a small dose (mine was something like 5mci) of I-131 or I-123 to see if any cells absorb it and light up on the body scan. If so, it may then be necessary to do another round of a higher ablation dose of RAI. It might be that if you have no Tg antibodies and your Tg is undetectable, the docs may not recommend or require that you have this sort of follow up dose and scan at 6 months. The body scan done with RAI doses is doesn't expose you to radiation in itself - of course, the RAI is radioactive...

    yes, follow up tracer dose
    Hi,
    that's strange, I responded to your post, but somehow it didn't go through. Yes, the first year tracer dose to ensure that the cancer hasn't returned.

    I wasn't sure if the dosage would be high enough to need isolation again. I do have my usual 3 month blood tests coming up soon. October will be one year since my RAI. My endo explained that he would take me off my meds and on the LID for 2-4 weeks again since it's routine to do so. In addition, he said that if my blood levels stay where it is, next year he would only do ultasounds.

    I wish he would just do ultasound for this one. I guess I should just wait and see what the blood test results are before over thinking too much...

    Thank you again.
  • nasher
    nasher Member Posts: 505 Member
    #5
    ibeatcanser said:

    yes, follow up tracer dose
    Hi,
    that's strange, I responded to your post, but somehow it didn't go through. Yes, the first year tracer dose to ensure that the cancer hasn't returned.

    I wasn't sure if the dosage would be high enough to need isolation again. I do have my usual 3 month blood tests coming up soon. October will be one year since my RAI. My endo explained that he would take me off my meds and on the LID for 2-4 weeks again since it's routine to do so. In addition, he said that if my blood levels stay where it is, next year he would only do ultasounds.

    I wish he would just do ultasound for this one. I guess I should just wait and see what the blood test results are before over thinking too much...

    Thank you again.

    i would recomend going
    i would recomend going through the follow up trace dose.

    if you dont have cancer then be happy.. but if you do have more then hopefully they can get it before it starts causing you problems.
  • alapah
    alapah Member Posts: 287
    #6
    nasher said:

    i would recomend going
    i would recomend going through the follow up trace dose.

    if you dont have cancer then be happy.. but if you do have more then hopefully they can get it before it starts causing you problems.

    I'm with Nasher
    best to go through the LID and get the tracer dose. you don't need as long an isolation at all with this small dose. it's an important tool in helping to gauge your progress in beating the cancer.
  • ibeatcanser
    ibeatcanser Member Posts: 47
    #7
    alapah said:

    I'm with Nasher
    best to go through the LID and get the tracer dose. you don't need as long an isolation at all with this small dose. it's an important tool in helping to gauge your progress in beating the cancer.

    thank you for the reassurance
    Thank you both very much for the reassurance. I think I'm going through the same emotions as I did when I first had to do the initial RAI. I was scared and more worried about the radiation exposure to others.

    I must thank you both for the encouragement. Better a bit of glowing "green" than having any trace of cancer. So, far I am cancer free, thank God. I pray that it stays that way. What has been worring me are bruises that are appearing out of no where. I'm 34 and I think I had a varicose vein pop in my calf (I also have ehler's danlos syndrome, the mild form), and bruising easily or having blood vessels pop are part of it). Essentially, I can hyper-extend my joints and skin. All of this I found out last year within a few months of each other.

    I'm alive and extremely grateful!!

    Thank you again!!!

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