I am struggling one year later

LSJ
LSJ Member Posts: 2
edited March 2014 in Thyroid Cancer #1
Hi, I am new to this site. I was diagnosed with thyroid cancer January 2008. Had surgery, RAI, and now am a year out. I am just so frustrated that I have to go thru more checkups a year later, esp. off thyroid for a month, then RAI, then body scan. I just want to say it's done and be over. I am so frustrated I have to go thru all of this again. Can you help me?
It is so hard to enter back in this again, I cannot even tell you........

Comments

  • jcvolt
    jcvolt Member Posts: 69
    #2
    why
    Is your thyroglobulin elevated. Is there a reason you are doing the RAI again? It is strange the way people just do what their doctors say.
  • LSJ
    LSJ Member Posts: 2
    #3
    jcvolt said:

    why
    Is your thyroglobulin elevated. Is there a reason you are doing the RAI again? It is strange the way people just do what their doctors say.

    Mistaken but still needing help
    Actually I found out yesterday I was mistaken. I do not take the RAI unless there is evidence of reoccurence. I am a great example of someone who does not just "do what the doctor says". I would have not been diagnosed because "I did not meet the guidelines".
    The point for me is I am struggling with having to re-enter this whole process again. I was hoping someone could help me with that.
  • jcvolt
    jcvolt Member Posts: 69
    #4
    LSJ said:

    Mistaken but still needing help
    Actually I found out yesterday I was mistaken. I do not take the RAI unless there is evidence of reoccurence. I am a great example of someone who does not just "do what the doctor says". I would have not been diagnosed because "I did not meet the guidelines".
    The point for me is I am struggling with having to re-enter this whole process again. I was hoping someone could help me with that.

    OK I am confused
    Why are you re-entering the process if there is no evidence of recurrence?
    You said you were off your meds that indicates RAI. If were to do RAI I would definitely go with the thyrogen shots rather than go hypo if that helps. But first there would have to be elevated thyroglobulin levels and other indications there was a recurrence.
  • usljh10
    usljh10 Member Posts: 85 Member
    #5
    jcvolt said:

    OK I am confused
    Why are you re-entering the process if there is no evidence of recurrence?
    You said you were off your meds that indicates RAI. If were to do RAI I would definitely go with the thyrogen shots rather than go hypo if that helps. But first there would have to be elevated thyroglobulin levels and other indications there was a recurrence.

    Now I'm confused
    I just went to DOC today for the yearly ck up. I've never had a whole body scan. I had thyroid cancer last March, did the LID, RAI. I START THE LID 5/6/09 and do the Thyrogen injections 5/11-12, low dose of RAI 5/13 and go in for whole body scan on the 15th. Are you saying I don't have to do this?
  • jcvolt
    jcvolt Member Posts: 69
    #6
    usljh10 said:

    Now I'm confused
    I just went to DOC today for the yearly ck up. I've never had a whole body scan. I had thyroid cancer last March, did the LID, RAI. I START THE LID 5/6/09 and do the Thyrogen injections 5/11-12, low dose of RAI 5/13 and go in for whole body scan on the 15th. Are you saying I don't have to do this?

    Who me?
    I was looking for clarification.
  • gailaj
    gailaj Member Posts: 36
    #7
    LSJ said:

    Mistaken but still needing help
    Actually I found out yesterday I was mistaken. I do not take the RAI unless there is evidence of reoccurence. I am a great example of someone who does not just "do what the doctor says". I would have not been diagnosed because "I did not meet the guidelines".
    The point for me is I am struggling with having to re-enter this whole process again. I was hoping someone could help me with that.

    I can relate
    Hi LSJ -
    I can definitely relate to the anxiety about having to go through the screening process again, which I think is what you're getting at? I just had my one-year anniversary testing --just ultrasound and bloodwork (TSH, thyroglobulin, thyroglobulin antibodies) -- I had a total thyroidectomy in March 2008 for papillary thyca, no followup RAI was necessary because the tumor was very small and localized. When I was getting the ultrasound done on Monday, the technician took a long time, and then went to get the radiologist (MD) to repeat the procedure....and I got that familiar "uh-oh" feeling. They talked mostly to each other, the Dr. kept saying "where did you want me to look? oh, those look benign...." which turned out to be a reference to enlarged cervical lymph nodes on both sides. My doctor called that afternoon (after receiving the report) to tell me that it's probably nothing to worry about but that we will have to wait and see if the tg is elevated....

    Now although I know that there are probably many other reasons that the lymph nodes could be enlarged, of course I am worried again because it's too "de ja vu" to last year....(and six years ago, when I had a melanoma skin cancer lesion diagnosed). As cancer survivors though, I guess this is something we will always have to live with -- I don't think the fear ever goes away. (BTW, still waiting on bloodwork!). But I guess the fear keeps us going for those checkups!
    Be well, Gail
  • jcvolt
    jcvolt Member Posts: 69
    #8
    gailaj said:

    I can relate
    Hi LSJ -
    I can definitely relate to the anxiety about having to go through the screening process again, which I think is what you're getting at? I just had my one-year anniversary testing --just ultrasound and bloodwork (TSH, thyroglobulin, thyroglobulin antibodies) -- I had a total thyroidectomy in March 2008 for papillary thyca, no followup RAI was necessary because the tumor was very small and localized. When I was getting the ultrasound done on Monday, the technician took a long time, and then went to get the radiologist (MD) to repeat the procedure....and I got that familiar "uh-oh" feeling. They talked mostly to each other, the Dr. kept saying "where did you want me to look? oh, those look benign...." which turned out to be a reference to enlarged cervical lymph nodes on both sides. My doctor called that afternoon (after receiving the report) to tell me that it's probably nothing to worry about but that we will have to wait and see if the tg is elevated....

    Now although I know that there are probably many other reasons that the lymph nodes could be enlarged, of course I am worried again because it's too "de ja vu" to last year....(and six years ago, when I had a melanoma skin cancer lesion diagnosed). As cancer survivors though, I guess this is something we will always have to live with -- I don't think the fear ever goes away. (BTW, still waiting on bloodwork!). But I guess the fear keeps us going for those checkups!
    Be well, Gail

    I was wondering
    I knew they checked thyroglobulin but didn't know they did ultrasound after thyroidectomy.
    So far I haven't had to do RAI scan.
  • gailaj
    gailaj Member Posts: 36
    #9
    jcvolt said:

    I was wondering
    I knew they checked thyroglobulin but didn't know they did ultrasound after thyroidectomy.
    So far I haven't had to do RAI scan.

    US / thyroglobulin
    These were the followup tests that my Dr. ordered for me for one year post-thyroidectomy:

    ultrasound of neck
    TSH level
    thyroglobulin level
    thyroglobulin antibodies level (since I tested positive for the antibodies last year -- this makes the thyroglobulin test less reliable...)

    I have never had an RAI scan either, just regular ultrasound. And still waiting on blood test results, we'll see....
  • jcvolt
    jcvolt Member Posts: 69
    #10
    gailaj said:

    US / thyroglobulin
    These were the followup tests that my Dr. ordered for me for one year post-thyroidectomy:

    ultrasound of neck
    TSH level
    thyroglobulin level
    thyroglobulin antibodies level (since I tested positive for the antibodies last year -- this makes the thyroglobulin test less reliable...)

    I have never had an RAI scan either, just regular ultrasound. And still waiting on blood test results, we'll see....

    OK
    I knew about the blood tests and now I know about the ultrasound. I am curious though, I know the surgeon left some thyroid tissue behind to avoid damaging my vocal nerves and whatever fragments may have been left by hashimotos ... so how do they know what your thyroglobulin level should be?
  • gailaj
    gailaj Member Posts: 36
    #11
    jcvolt said:

    OK
    I knew about the blood tests and now I know about the ultrasound. I am curious though, I know the surgeon left some thyroid tissue behind to avoid damaging my vocal nerves and whatever fragments may have been left by hashimotos ... so how do they know what your thyroglobulin level should be?

    thyroglobulin
    It's my understanding that your thyroglobulin levels should be undetectable....if they are rising, it could be an indication that cancer has returned. (STILL waiting for my results of this test....)
  • jcvolt
    jcvolt Member Posts: 69
    #12
    gailaj said:

    thyroglobulin
    It's my understanding that your thyroglobulin levels should be undetectable....if they are rising, it could be an indication that cancer has returned. (STILL waiting for my results of this test....)

    I was wondering
    I know they left some thyroid tissue behind so I will have some thyroglobulin but it seems someone should have done a baseline test don't you think?
  • gailaj
    gailaj Member Posts: 36
    #13
    jcvolt said:

    I was wondering
    I know they left some thyroid tissue behind so I will have some thyroglobulin but it seems someone should have done a baseline test don't you think?

    Not sure...
    I don't think I had my first one done before the surgery (which was March 2008); BUT they did do it one month afterwards, maybe that was for comparison.....
  • jcvolt
    jcvolt Member Posts: 69
    #14
    gailaj said:

    Not sure...
    I don't think I had my first one done before the surgery (which was March 2008); BUT they did do it one month afterwards, maybe that was for comparison.....

    7 weeks
    7 weeks post surgery, next appointment in june and no thyroglobulin test scheduled.
    Doctors are such jerks. Mine seems to be keeping me hypo just to screw with me. I am taking extra thyroid hormone to keep from losing all my hair and she wont increase the dose until june. I hate breaking pills, hope I don't run out.
  • Thankfulandblessed
    Thankfulandblessed Member Posts: 10
    #15
    LSJ said:

    Mistaken but still needing help
    Actually I found out yesterday I was mistaken. I do not take the RAI unless there is evidence of reoccurence. I am a great example of someone who does not just "do what the doctor says". I would have not been diagnosed because "I did not meet the guidelines".
    The point for me is I am struggling with having to re-enter this whole process again. I was hoping someone could help me with that.

    struggling
    Please know you are cared about. I believe you need to do research and understand as much as you can about your type of cancer. Was it papillary thyroid cancer? Were there any sub types attached to it?

    You will have to keep watching for many years so I think you should just expect that. But I am sorry to tell you that I think some times they are skipping a very simple test that can help watch for a return..... The ultrasound of the neck. The reason I say this is because I had all good reports on all my tests (thyroglobulin was low, negative body scans, clear chest xrays) but still ended up with the cancer coming back.

    My thyroid cancer is not being seen by iodine body scans. It also wasn't picked up with the thyroglobulin because I have thyroid antibodies and so that invalidates that test. I didn't know that until just recently. If someone would have done a neck ultrasound a year ago and even more than that they they would have seen my turmors. One was the size of an egg, the other was smaller. They were also seen on PET scan. So I had to have most of my lymph nodes in my neck and the tumors removed last week. I am still thinking positive as thyroid cancer grows slowly, and that is one reason for you to think positive also, it is slow growing.

    If you talk to the radiation oncologist about your scan, they can make suggestions of things that can make going off your thyroid med a little easier. There are somethings I was taught that were helpful when I went of my thyroxine for testing.

    Take care. You are prayed for, right now
  • Unknown
    Unknown
    #16
    jcvolt said:

    7 weeks
    7 weeks post surgery, next appointment in june and no thyroglobulin test scheduled.
    Doctors are such jerks. Mine seems to be keeping me hypo just to screw with me. I am taking extra thyroid hormone to keep from losing all my hair and she wont increase the dose until june. I hate breaking pills, hope I don't run out.

    This comment has been removed by the Moderator
  • Unknown
    Unknown
    #17
    Thankfulandblessed said:

    struggling
    Please know you are cared about. I believe you need to do research and understand as much as you can about your type of cancer. Was it papillary thyroid cancer? Were there any sub types attached to it?

    You will have to keep watching for many years so I think you should just expect that. But I am sorry to tell you that I think some times they are skipping a very simple test that can help watch for a return..... The ultrasound of the neck. The reason I say this is because I had all good reports on all my tests (thyroglobulin was low, negative body scans, clear chest xrays) but still ended up with the cancer coming back.

    My thyroid cancer is not being seen by iodine body scans. It also wasn't picked up with the thyroglobulin because I have thyroid antibodies and so that invalidates that test. I didn't know that until just recently. If someone would have done a neck ultrasound a year ago and even more than that they they would have seen my turmors. One was the size of an egg, the other was smaller. They were also seen on PET scan. So I had to have most of my lymph nodes in my neck and the tumors removed last week. I am still thinking positive as thyroid cancer grows slowly, and that is one reason for you to think positive also, it is slow growing.

    If you talk to the radiation oncologist about your scan, they can make suggestions of things that can make going off your thyroid med a little easier. There are somethings I was taught that were helpful when I went of my thyroxine for testing.

    Take care. You are prayed for, right now

    This comment has been removed by the Moderator
  • ThankfulEveryDay
    ThankfulEveryDay Member Posts: 1
    #18
    Thankfulandblessed said:

    struggling
    Please know you are cared about. I believe you need to do research and understand as much as you can about your type of cancer. Was it papillary thyroid cancer? Were there any sub types attached to it?

    You will have to keep watching for many years so I think you should just expect that. But I am sorry to tell you that I think some times they are skipping a very simple test that can help watch for a return..... The ultrasound of the neck. The reason I say this is because I had all good reports on all my tests (thyroglobulin was low, negative body scans, clear chest xrays) but still ended up with the cancer coming back.

    My thyroid cancer is not being seen by iodine body scans. It also wasn't picked up with the thyroglobulin because I have thyroid antibodies and so that invalidates that test. I didn't know that until just recently. If someone would have done a neck ultrasound a year ago and even more than that they they would have seen my turmors. One was the size of an egg, the other was smaller. They were also seen on PET scan. So I had to have most of my lymph nodes in my neck and the tumors removed last week. I am still thinking positive as thyroid cancer grows slowly, and that is one reason for you to think positive also, it is slow growing.

    If you talk to the radiation oncologist about your scan, they can make suggestions of things that can make going off your thyroid med a little easier. There are somethings I was taught that were helpful when I went of my thyroxine for testing.

    Take care. You are prayed for, right now

    Thankfulandblessed - THKX for your info
    Had my thyroid removed almost 5 years ago . . . . tumors on both lobes, the largest being follicular with other spots identified as the follicular variant of papillary. I had 85mci of i-131, followed a year later with Thyrogen-induced Tg testing, ultrasounds and chest x-rays. Everything has always looked fine, although there was some discussion following the first WBS over whether something that showed up was actually significant or was "background noise." We deferred to the ultrasound and Tg test results and decided it was fine. Subsequent Thyrogen scan in 2008 was clear. This week, I visited my Endo for my annual check-up . . . . he found a lump in my neck. Damn. We are hoping, given the history of clear ultrasounds and Tg testing (last result was 0.7 I think). that it is simply scar tissue filling the space. But it does concern me. I've never been totally comfortable with relying on my Tg tests because my TPO Ab 93 (normal values from this lab are 0-34) and I don't really understand the difference between TG-Ab and TPO-Ab.

    Will be having a hospital-based neck ultrasound soon to follow up. Hope I'm not looking at another ablation or surgery, but won't complain too loudly if I am. It could be worse.
  • Unknown
    Unknown
    #19
    This comment has been removed by the Moderator

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