2 RNs said, "I didn't think you could have recurrent thyroid cancer after thyroid removal"

MLG
MLG Member Posts: 52
edited March 2014 in Thyroid Cancer #1
I know I need to wait until my body scan is done and I get the results, but I had TT in Aug. 2008.
Thyroglobulin always 0.2
Now it is 14 with body scan scheduled Friday 2nd.

I've heard 2 nurses (not at my drs office)say that they didn't think you could get thyroid cancer reoccurance after having TT, the ablation and body scan being clean afterwards.

Everything I've read states that if thyroglobulin raises post TT that it could be a reoccurance.

People have just said, "something is going on we just don't know what." Are they saying it that way because they technically can't say anything until the test results are in?
What else could it be when my body scan after my TT came back clean and the lab value has always been 0.2
Michelle

Comments

  • butterfly123
    butterfly123 Member Posts: 52
    #2
    Tg
    Hi Michelle-
    The nurses and a lot of the medical community do not 100% understand thyroid cancer. After TT and RAI, any elevation of Tg, espcially while on thyroid meds, is recurrent thyroid cancer. Sorry to be so blunt about it but my Tg was always untectable and now it is elevated. I have recurrent thyroid cancer.

    Hope your scan on Friday goes well. If it is negative, then insist on a PET/Ct scan. Please let me know how it goes. I'll send some extra prayers your way...
  • MLG
    MLG Member Posts: 52
    #3
    butterfly123 said:

    Tg
    Hi Michelle-
    The nurses and a lot of the medical community do not 100% understand thyroid cancer. After TT and RAI, any elevation of Tg, espcially while on thyroid meds, is recurrent thyroid cancer. Sorry to be so blunt about it but my Tg was always untectable and now it is elevated. I have recurrent thyroid cancer.

    Hope your scan on Friday goes well. If it is negative, then insist on a PET/Ct scan. Please let me know how it goes. I'll send some extra prayers your way...

    What is your Tg level now
    What is your Tg level now and what are they having to do?
    Surgery and RAI or just RAI?

    Michelle
  • butterfly123
    butterfly123 Member Posts: 52
    #4
    MLG said:

    What is your Tg level now
    What is your Tg level now and what are they having to do?
    Surgery and RAI or just RAI?

    Michelle

    Tg levels
    My Tg is 7 while on thyroid meds and 150 while hypo. I had RAI but it did not work and now my tumor is classified as non-avid RAI. Surgery is very risky in my case and therefore I am doing beam radiation.
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #5
    Hi MLG
    Elevated TG means a reocurrence. Believe me, I thought after my TT and RAI, and being clean for three years, I was home free. I thought I had beat thyroid cancer. Unfortunatley, I recently found out that hurthle cell cancer is considered a recurrent cancer, because it tends to travel through the blood instead of the lymph nodes. Other types of thyroid cancer usually travel through the lymph nodes, but you can still have a reocurrence with any kind.

    They tell us it's one of the best kinds of cancers you can get because it's so treatable, but it's still cancer, and still unpredictable.

    I've had two reocurrences in three years, after being clean for three. It sucks majorly, and I know I'll probably never be cancer free. The best I can hope for is to have it go into remission for more than a year at a time, or for a very long time and hope some other reasearch and treatments become available.

    Stay strong, you can beat this!
  • MLG
    MLG Member Posts: 52
    #6
    butterfly123 said:

    Tg levels
    My Tg is 7 while on thyroid meds and 150 while hypo. I had RAI but it did not work and now my tumor is classified as non-avid RAI. Surgery is very risky in my case and therefore I am doing beam radiation.

    I never heard of non-avid
    I never heard of non-avid RAI.
    Was yours also papillary from the beginning?
    Why is surgery risky?

    Michelle
  • MLG
    MLG Member Posts: 52
    #7
    BellsAngel69 said:

    Hi MLG
    Elevated TG means a reocurrence. Believe me, I thought after my TT and RAI, and being clean for three years, I was home free. I thought I had beat thyroid cancer. Unfortunatley, I recently found out that hurthle cell cancer is considered a recurrent cancer, because it tends to travel through the blood instead of the lymph nodes. Other types of thyroid cancer usually travel through the lymph nodes, but you can still have a reocurrence with any kind.

    They tell us it's one of the best kinds of cancers you can get because it's so treatable, but it's still cancer, and still unpredictable.

    I've had two reocurrences in three years, after being clean for three. It sucks majorly, and I know I'll probably never be cancer free. The best I can hope for is to have it go into remission for more than a year at a time, or for a very long time and hope some other reasearch and treatments become available.

    Stay strong, you can beat this!

    I had my scan yesterday so
    BellsAngle69
    I had my scan yesterday so hopefully I will find out early next week.
    So, did your thyroid cancer start off at being this hurthle cell kind or was it papillary or follicular and then when it came back it came back more aggressive by being in the blood and then it was named hurthle cell?

    Does a full body scan show hurthle cell or is that another scan?
    What was your thyroglobulin when you found out you had a reoccurance?

    Mine was papillary and was in 4 of the 6 lymph nodes taken out of my neck along w/thyroid.

    Can papillary change into hurthle?
    Along w/the diagnosis of cancer we also have to deal w/the ongoing medical expense of things every year.
    My husands insurance as a very, very high deductible and of course even if I went full time then I couldn't get health insurance until I am cancer free for awhile.
    Michelle
  • butterfly123
    butterfly123 Member Posts: 52
    #8
    MLG said:

    I never heard of non-avid
    I never heard of non-avid RAI.
    Was yours also papillary from the beginning?
    Why is surgery risky?

    Michelle

    non-avid
    When thyroid cancer comes back it can sometimes lose its ability to take up RAI. It is one of the ways that it starts to DEdifferentiate. Pure papillary is differentiated thyroid cancer. My cancer was always papillary (focillular variant of papillary). The tumor cannot be operated on because it is in my upper cervical spine. The cancer can come back anywhere.....so make sure your doctors find the source of your Tg. Let us know how u make out with your WBS. The WBS will show those areas of RAI-Avid recurrent thyroid cancer. Good luck!
  • BellsAngel69
    BellsAngel69 Member Posts: 104 Member
    #9
    MLG said:

    I had my scan yesterday so
    BellsAngle69
    I had my scan yesterday so hopefully I will find out early next week.
    So, did your thyroid cancer start off at being this hurthle cell kind or was it papillary or follicular and then when it came back it came back more aggressive by being in the blood and then it was named hurthle cell?

    Does a full body scan show hurthle cell or is that another scan?
    What was your thyroglobulin when you found out you had a reoccurance?

    Mine was papillary and was in 4 of the 6 lymph nodes taken out of my neck along w/thyroid.

    Can papillary change into hurthle?
    Along w/the diagnosis of cancer we also have to deal w/the ongoing medical expense of things every year.
    My husands insurance as a very, very high deductible and of course even if I went full time then I couldn't get health insurance until I am cancer free for awhile.
    Michelle

    My diagnosis
    was well differentiated papillary/follicular with hurthle cell involvement. If they did the pathology correct and it was papillary, it can't change, unless hurthle cells were present but indetectable at the time. I think you're safe in your diagnosis.

    My thyroglobulin was under 1 for three years, I was fine, then it started to rise, and my doctors didn't tell me util I went up to 6. It went from under 1 to 2, then 4, then 6, then 9. Most insurances won't ok a PET scan until your level is over 10, but my insurance let me have one. It showed a spot in my hip bone. I had another RAI treatment in the hospital, but the uptake wasn't enough to kill the cancer there, because hurthle cell doesn't absorb radio-iodine as well as other thyroid cancers. After that my TG kept rising, and a pet scan showed the same spot in my hip. I had to have surgery to remove it. After that, my tg kept rising. At 29, my PET scan was clean, or so they thought. Six month later my TG jumped to 130. Another PET scan showed spots, they thought in my stomach, but it turned out to be my liver. I just had a liver resection to remove the lesions. I still don't know if I'm cancer free again or what my TG is. I go back to the endocrinologist in May, so I guess I'll find out then.

    Hurthle cell is very rare, but the most likely kind to have a reocurrence. Having it metastisize to the liver is very very rare. It really sucks. I'll probably never be cancer free. Right now the best I can hope and pray for is that it goes in remission again, or it doesn't come back for a really long time, and in a place they can treat. In the mean time, I pray for more research and developments for hurthle cell cancer.
  • butterfly123
    butterfly123 Member Posts: 52
    #10
    BellsAngel69 said:

    My diagnosis
    was well differentiated papillary/follicular with hurthle cell involvement. If they did the pathology correct and it was papillary, it can't change, unless hurthle cells were present but indetectable at the time. I think you're safe in your diagnosis.

    My thyroglobulin was under 1 for three years, I was fine, then it started to rise, and my doctors didn't tell me util I went up to 6. It went from under 1 to 2, then 4, then 6, then 9. Most insurances won't ok a PET scan until your level is over 10, but my insurance let me have one. It showed a spot in my hip bone. I had another RAI treatment in the hospital, but the uptake wasn't enough to kill the cancer there, because hurthle cell doesn't absorb radio-iodine as well as other thyroid cancers. After that my TG kept rising, and a pet scan showed the same spot in my hip. I had to have surgery to remove it. After that, my tg kept rising. At 29, my PET scan was clean, or so they thought. Six month later my TG jumped to 130. Another PET scan showed spots, they thought in my stomach, but it turned out to be my liver. I just had a liver resection to remove the lesions. I still don't know if I'm cancer free again or what my TG is. I go back to the endocrinologist in May, so I guess I'll find out then.

    Hurthle cell is very rare, but the most likely kind to have a reocurrence. Having it metastisize to the liver is very very rare. It really sucks. I'll probably never be cancer free. Right now the best I can hope and pray for is that it goes in remission again, or it doesn't come back for a really long time, and in a place they can treat. In the mean time, I pray for more research and developments for hurthle cell cancer.

    surgery
    Bellsangel69
    i hope you are recovering well from your surgery? Sending prayers your way that your Tg will soon become undectable again.

    I agree that we need more research for thyroid cancer! I posted before - I have recurrent follicular variant of papillary with mets in spine and lungs. My doctor could not give me a prognosis saying that my case is very rare. I am having beam radiation in a few weeks then we'll measure my Tg in a few months later.

    So let's both hope and pray for undetable Tg levels and we both will be cancer-free for a very long time!!

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