7 years of papulary thyroid cancer

Summer76
Summer76 Member Posts: 9
edited March 2014 in Thyroid Cancer #1
I was first diagnosed 7 years ago with papulary thyroid cancer. I was 12 weeks pregnant. I had a total thyroidectomy. Then when my son was 6 weeks old I had my first dose of radioactive iodine. Since then I've had 2 more surgerys and 1 more dose of radioactive iodine. My last blood test still showed thyroglobulin. My husband wants to quit his job and open his own bussiness I cant get private health insurance until I'm cured. I just need this over with but my doctor cant find the cancer and wants to wait another 4 months to look again. My question is should I be seeing another doctor and try to be more aggressive to get rid of this? or should I wait?

Comments

  • Rustifox
    Rustifox Member Posts: 110
    #2
    You need to be seen by someone who specializes in treating 'difficult to erradicate' thyroid cancer; unfortunately, not all endo's have equal skill levels when it comes to treating this.

    I would definitely seek a second opinion, Summer, if it were me. There are ways and means of locating this cancerous site; there are ways and means of making your body absorb more of the radioactive iodine, too (but if the location is bigger than 1cm, it does need surgical removal, followed by radioactive iodine, if it is iodine active...) which should be known from both of your post treatment dose scans.

    If you are in the US, consider contacting the coordinator/facilitator for your regional group meetings of THYCA:
    http://www.thyca.org/sg/local.htm
    there are also other support opportunities through here:
    http://www.thyca.org/support.htm

    The members of your local/state meeting group can likely recommend the 'leading' thyca specialist in your area.

    If you are in Canada, you can join the Canadian Thyroid Cancer Survivors group, and post a message on the message board - members with more difficult situations/hard to erradicate persistant or recurrent disease will help you:
    http://www.thryvors.org/
    Here is the support group message board:
    http://health.groups.yahoo.com/group/thryvors/

    Your current doctor should not be concerned at all with your desire to seek a second opinion at this point - and if he or she is, that is too bad - you should do it anyway. You do need to be under a thyca specialist care, with ongoing thyroglobulin levels, particularly if they are above 2-5; some doctors will take a 'wait and watch' approach with very low readings of thyroglobulin, but it is important to know that these cells can mutate in the interim, and may never increase the amount of thyroglobulin... so the source needs to be located.

    One last source for your consideration is the Advanced Thyroid Cancer group - these are fellow patients with very difficult cases, but again, they also know the finest specialists, so if you were to post looking for a specialist in your area, I'm sure someone there can likely make a suggestion or two for you:
    http://www.thyca.org/email.htm#advanced

    All the best to you, Summer. If it were me, I'd definitely be seeking a second opinion and more aggressive treatment now.
  • Summer76
    Summer76 Member Posts: 9
    #3
    Rustifox said:

    You need to be seen by someone who specializes in treating 'difficult to erradicate' thyroid cancer; unfortunately, not all endo's have equal skill levels when it comes to treating this.

    I would definitely seek a second opinion, Summer, if it were me. There are ways and means of locating this cancerous site; there are ways and means of making your body absorb more of the radioactive iodine, too (but if the location is bigger than 1cm, it does need surgical removal, followed by radioactive iodine, if it is iodine active...) which should be known from both of your post treatment dose scans.

    If you are in the US, consider contacting the coordinator/facilitator for your regional group meetings of THYCA:
    http://www.thyca.org/sg/local.htm
    there are also other support opportunities through here:
    http://www.thyca.org/support.htm

    The members of your local/state meeting group can likely recommend the 'leading' thyca specialist in your area.

    If you are in Canada, you can join the Canadian Thyroid Cancer Survivors group, and post a message on the message board - members with more difficult situations/hard to erradicate persistant or recurrent disease will help you:
    http://www.thryvors.org/
    Here is the support group message board:
    http://health.groups.yahoo.com/group/thryvors/

    Your current doctor should not be concerned at all with your desire to seek a second opinion at this point - and if he or she is, that is too bad - you should do it anyway. You do need to be under a thyca specialist care, with ongoing thyroglobulin levels, particularly if they are above 2-5; some doctors will take a 'wait and watch' approach with very low readings of thyroglobulin, but it is important to know that these cells can mutate in the interim, and may never increase the amount of thyroglobulin... so the source needs to be located.

    One last source for your consideration is the Advanced Thyroid Cancer group - these are fellow patients with very difficult cases, but again, they also know the finest specialists, so if you were to post looking for a specialist in your area, I'm sure someone there can likely make a suggestion or two for you:
    http://www.thyca.org/email.htm#advanced

    All the best to you, Summer. If it were me, I'd definitely be seeking a second opinion and more aggressive treatment now.

    Rustifox I want to thank you for the info I will be getting a second opinion. I never before was on this site and I can't believe how much information it has. I haven't done much research on my cancer. Recently I found a large lump in my cheek it has me scared because the doctor told me without any tests that it is just fat. I'm petite and just don't really believe him. I'll be asking my next doctor to check it out for me. Thanks again, and take care.

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