Full body scan after RAI

rzemach
rzemach Member Posts: 33
edited March 2014 in Thyroid Cancer #1
Hi all:
I have papillary thyroid cancner and had my entire thyroid removed two months agao. On Feb18th I did the full body scan after RAI (the RAI took place on Feb 7th). The technician told me that the results were strange and to come back today (Feb 21st) - they did another scan and then a CT of my mid section.

I was told that the technician cannot give me results and I have to wait for my doctor's appointment next week.

I am more than a little bit nervous - has anyone had a similar experience?

Thanks
Robin

Comments

  • Charmed324
    Charmed324 Member Posts: 2
    #2
    Full Body Scan
    Hi Robin

    I also had papillary thyroid cancer and had my full body scan in october. The technician had me re-take my scan three times because of some abnormal reading in my mid-section also. The endo doctor stated that he did not know what it is and never saw anything like it. He felt that It could have been an artifact in the scan itself. I am doing fine and am schedule to see my endo doctor in March to get my 6 month scan. Good luck with your results.

    Thanks,
    Carmen
  • rzemach
    rzemach Member Posts: 33
    #3
    Charmed324 said:

    Full Body Scan
    Hi Robin

    I also had papillary thyroid cancer and had my full body scan in october. The technician had me re-take my scan three times because of some abnormal reading in my mid-section also. The endo doctor stated that he did not know what it is and never saw anything like it. He felt that It could have been an artifact in the scan itself. I am doing fine and am schedule to see my endo doctor in March to get my 6 month scan. Good luck with your results.

    Thanks,
    Carmen

    Got the scan back
    Hi Carmen
    thanks for your comments.

    I got the scan back and they found a spot in my womb that absorbed radiation but the CT did not show anything. My oncologist told me that it was strange but to forget about it. I would really be interested if anyone else got results like this.
    thanks
    robin
  • butterfly123
    butterfly123 Member Posts: 52
    #4
    rzemach said:

    Got the scan back
    Hi Carmen
    thanks for your comments.

    I got the scan back and they found a spot in my womb that absorbed radiation but the CT did not show anything. My oncologist told me that it was strange but to forget about it. I would really be interested if anyone else got results like this.
    thanks
    robin

    Hi Robin-
    I had a similar experience. I had my TT about 5 years ago. The full body scan after RAI treatment showed uptake in my upper chest area (an area where thyroid cancer does not go). The radiologist told me it was unusual and actually re-scanned me the next day. The area/spot was still there. Of course I was freaked out so my endo ordered a CT that did not show anything. You may want to ask for another whole body scan (in the next couple of days) and also drink water to make sure it is not residual RAI hanging out there. You also want to have your thyroglobulin level tested. The thyroglobulin level will typically let you know if there is thyroid cancer left in your body. The thyroglobulin test that I think is most "important" is the next one you have when you go hypo again (your endo will probably order it in 12-months).

    But I have to tell you that I do have recurrent thyroid cancer....I was rediagnosed about 12 months ago. I am telling you this not to freak you out but to hopefully help you or someone else out there. So I wonder if that spot in my chest was a sign of things to come. My reoccurance was detected by my thyroglobulin level. It spiked up while I was on my thyroid medication. It ends up that I have a bone met on my vertebrae. I was treated with RAI again and the my lungs lit up. So we think I also have diffuse microscopic metastises to the lungs. Both the bone and lung mets are rare for a case like myself. I was stage 1 with no lymph node involvement.

    Curious on what type of thyroid cancer you have?
    Hope this helps. Please let me know if you have any questions and I'll be glad to help.
  • rzemach
    rzemach Member Posts: 33
    #5
    butterfly123 said:

    Hi Robin-
    I had a similar experience. I had my TT about 5 years ago. The full body scan after RAI treatment showed uptake in my upper chest area (an area where thyroid cancer does not go). The radiologist told me it was unusual and actually re-scanned me the next day. The area/spot was still there. Of course I was freaked out so my endo ordered a CT that did not show anything. You may want to ask for another whole body scan (in the next couple of days) and also drink water to make sure it is not residual RAI hanging out there. You also want to have your thyroglobulin level tested. The thyroglobulin level will typically let you know if there is thyroid cancer left in your body. The thyroglobulin test that I think is most "important" is the next one you have when you go hypo again (your endo will probably order it in 12-months).

    But I have to tell you that I do have recurrent thyroid cancer....I was rediagnosed about 12 months ago. I am telling you this not to freak you out but to hopefully help you or someone else out there. So I wonder if that spot in my chest was a sign of things to come. My reoccurance was detected by my thyroglobulin level. It spiked up while I was on my thyroid medication. It ends up that I have a bone met on my vertebrae. I was treated with RAI again and the my lungs lit up. So we think I also have diffuse microscopic metastises to the lungs. Both the bone and lung mets are rare for a case like myself. I was stage 1 with no lymph node involvement.

    Curious on what type of thyroid cancer you have?
    Hope this helps. Please let me know if you have any questions and I'll be glad to help.

    Hi:
    thanks for you answer and I hope that things get better for you!!

    I have papillary thryoid cancer found in tumors in both lobes and non encapsulated. I had the whole thryoid taken out in October and RAI done beginning of Feb. My thyroglobulin level is very low (checked again this week) and so the endo feels that I should ignore the strange scan for now. A CAT scan also did not find anything. I am doing another blood test in 3 months and hopefully things will stay the same.

    Your comments did help. I realize that I need to keep watching this.

    hope you are feeling better soon!!

    Robin
  • inorangecounty
    inorangecounty Member Posts: 4
    #6
    rzemach said:

    Hi:
    thanks for you answer and I hope that things get better for you!!

    I have papillary thryoid cancer found in tumors in both lobes and non encapsulated. I had the whole thryoid taken out in October and RAI done beginning of Feb. My thyroglobulin level is very low (checked again this week) and so the endo feels that I should ignore the strange scan for now. A CAT scan also did not find anything. I am doing another blood test in 3 months and hopefully things will stay the same.

    Your comments did help. I realize that I need to keep watching this.

    hope you are feeling better soon!!

    Robin

    Scan results after complete thyrodectomy, papillary carcinoma
    Hi
    I was diagonose with papillary carcinoma, have a complete thyrodectomy on February 17
    then the RAI treatment on March 27 and a full body scan a week ago.
    I saw my endocrinologist today and I'm frankly confused...she said the scan shows the radiotion is working, it shows it is attached to the residual thyroid tissue, she said the radiation works for a period of six months, she said that is good because not always works for some people it just wash out, I asked her what she mean by that "do I still have cancer or not" she said she does not know ???? she order lab test and I will see her on May 6, and another scan on 6 months.

    Help ...confuse ...anybody.
  • butterfly123
    butterfly123 Member Posts: 52
    #7
    inorangecounty said:

    Scan results after complete thyrodectomy, papillary carcinoma
    Hi
    I was diagonose with papillary carcinoma, have a complete thyrodectomy on February 17
    then the RAI treatment on March 27 and a full body scan a week ago.
    I saw my endocrinologist today and I'm frankly confused...she said the scan shows the radiotion is working, it shows it is attached to the residual thyroid tissue, she said the radiation works for a period of six months, she said that is good because not always works for some people it just wash out, I asked her what she mean by that "do I still have cancer or not" she said she does not know ???? she order lab test and I will see her on May 6, and another scan on 6 months.

    Help ...confuse ...anybody.

    still have cancer?
    Hi-
    Hope you are doing well and recovering from your surgery and treatment.

    RAI treatment is used to kill off any remaining thyroid cells, either normal thyroid tissue and/or thyroid cancer. So when it "lights up" on the WBS then that is good. It means that it is attacking left over thyroid cells in your body. After TT and RAI treatment your thyroglobulin blood level should be close to undetectable. The thyroglobulin blood level is then used to monitor you for the rest of your life. Any elevation in thyroglobulin (assuming it goes to an "undectable" level post RAI treatment) will be recurrent thyroid cancer.

    It sounds like your doctor is going to get a thyroglobilin blood level sometime in 6 months. I have it heard that it can take up to a year for the RAI to work.

    In addition to the thyroglobulin (6-month) blood test, your doctor will have you become hypothyroid or give you thyrogen shots in the next 12 months. She will then measure your thyroglobulin level during that process. Hopefully the Thyroglobulun will be "undectable" meaning you are cancer free. She also probably order ultrasound of your neck and neck lymph nodes. Ultrasounds and thyroglobulin blood tests are the standard protocol for thyroid cancer survivers.

    Hope this helps.
  • weberdns
    weberdns Member Posts: 154
    #8
    inorangecounty said:

    Scan results after complete thyrodectomy, papillary carcinoma
    Hi
    I was diagonose with papillary carcinoma, have a complete thyrodectomy on February 17
    then the RAI treatment on March 27 and a full body scan a week ago.
    I saw my endocrinologist today and I'm frankly confused...she said the scan shows the radiotion is working, it shows it is attached to the residual thyroid tissue, she said the radiation works for a period of six months, she said that is good because not always works for some people it just wash out, I asked her what she mean by that "do I still have cancer or not" she said she does not know ???? she order lab test and I will see her on May 6, and another scan on 6 months.

    Help ...confuse ...anybody.

    She is right
    What the plan that is usually followed is that they repeat the thyroglobulin level in 6 months and see if the levels are good or not. If they are good, then you do not have active cancer in your body. If it is elevated, they usually repeat the RI. Tell me....when did your endo have you go off the LID or did you do LID and when did you restart your thyroid meds if you went hypo??? You won't really know for 6 months if you still have cancer or not. Try not to panice....at least that is what I keep telling myself and enjoy this time of feeling cancer free!
  • inorangecounty
    inorangecounty Member Posts: 4
    #9
    weberdns said:

    She is right
    What the plan that is usually followed is that they repeat the thyroglobulin level in 6 months and see if the levels are good or not. If they are good, then you do not have active cancer in your body. If it is elevated, they usually repeat the RI. Tell me....when did your endo have you go off the LID or did you do LID and when did you restart your thyroid meds if you went hypo??? You won't really know for 6 months if you still have cancer or not. Try not to panice....at least that is what I keep telling myself and enjoy this time of feeling cancer free!

    Thank you very much and God bless you.
    Let me tell you...I have two surgerys in a month.
    I have a nodule on the right side of the thyroid for several years and have periodic scan and biopsys, no signs of cancer but it was growing and the endo recomend surgery.
    During the procedure the surgeon send the righ side of the thyroid to the lab to test for cancer the pathologys did not found cancer...after 3 days the surgeon call me with bad news, after more test the patholyst found small cancer cells on the isthmus margin, two weeks later I have the second surgery with a complete thyrodectomy no evidence of malignancy was found.

    I start with levoxyl 100 mcg for two weeks because I was very week and to have me recover from the two surgerys, then I took Cytomel for two weeks, then I stop the medication and start a free sodium diet for two weeks, I became hypo very quickly.
    Have the RAI treatment and went to seclution in my room for 3 days, start with Levoxyl 100 mcg after the 3 days and finally have the Scan after a week of the RAI treatment.

    Thank you very very much for the information my Endo does not explain much ..I just thougth it was going to be easier... not knowing sometimes is worst at least for me.
  • inorangecounty
    inorangecounty Member Posts: 4
    #10
    butterfly123 said:

    still have cancer?
    Hi-
    Hope you are doing well and recovering from your surgery and treatment.

    RAI treatment is used to kill off any remaining thyroid cells, either normal thyroid tissue and/or thyroid cancer. So when it "lights up" on the WBS then that is good. It means that it is attacking left over thyroid cells in your body. After TT and RAI treatment your thyroglobulin blood level should be close to undetectable. The thyroglobulin blood level is then used to monitor you for the rest of your life. Any elevation in thyroglobulin (assuming it goes to an "undectable" level post RAI treatment) will be recurrent thyroid cancer.

    It sounds like your doctor is going to get a thyroglobilin blood level sometime in 6 months. I have it heard that it can take up to a year for the RAI to work.

    In addition to the thyroglobulin (6-month) blood test, your doctor will have you become hypothyroid or give you thyrogen shots in the next 12 months. She will then measure your thyroglobulin level during that process. Hopefully the Thyroglobulun will be "undectable" meaning you are cancer free. She also probably order ultrasound of your neck and neck lymph nodes. Ultrasounds and thyroglobulin blood tests are the standard protocol for thyroid cancer survivers.

    Hope this helps.

    Thank you very much.
    Dear Buttefly
    You have really help me to understand...please see my recent post.
    Thank you so very much!!! hope you are doing well.
  • weberdns
    weberdns Member Posts: 154
    #11
    inorangecounty said:

    Thank you very much and God bless you.
    Let me tell you...I have two surgerys in a month.
    I have a nodule on the right side of the thyroid for several years and have periodic scan and biopsys, no signs of cancer but it was growing and the endo recomend surgery.
    During the procedure the surgeon send the righ side of the thyroid to the lab to test for cancer the pathologys did not found cancer...after 3 days the surgeon call me with bad news, after more test the patholyst found small cancer cells on the isthmus margin, two weeks later I have the second surgery with a complete thyrodectomy no evidence of malignancy was found.

    I start with levoxyl 100 mcg for two weeks because I was very week and to have me recover from the two surgerys, then I took Cytomel for two weeks, then I stop the medication and start a free sodium diet for two weeks, I became hypo very quickly.
    Have the RAI treatment and went to seclution in my room for 3 days, start with Levoxyl 100 mcg after the 3 days and finally have the Scan after a week of the RAI treatment.

    Thank you very very much for the information my Endo does not explain much ..I just thougth it was going to be easier... not knowing sometimes is worst at least for me.

    Feel free to ask!
    We'll try to explain things to you. It's too bad that your endo doesn't explain much. Mine explains everything even though I am a nurse, and used to be an Oncology nurse a long time ago. Make sure when you go for your appointment that you write down questions and demand answers that you understand. That is what you are paying the doctor to do!
  • JESSCLARK30
    JESSCLARK30 Member Posts: 5
    #12
    butterfly123 said:

    Hi Robin-
    I had a similar experience. I had my TT about 5 years ago. The full body scan after RAI treatment showed uptake in my upper chest area (an area where thyroid cancer does not go). The radiologist told me it was unusual and actually re-scanned me the next day. The area/spot was still there. Of course I was freaked out so my endo ordered a CT that did not show anything. You may want to ask for another whole body scan (in the next couple of days) and also drink water to make sure it is not residual RAI hanging out there. You also want to have your thyroglobulin level tested. The thyroglobulin level will typically let you know if there is thyroid cancer left in your body. The thyroglobulin test that I think is most "important" is the next one you have when you go hypo again (your endo will probably order it in 12-months).

    But I have to tell you that I do have recurrent thyroid cancer....I was rediagnosed about 12 months ago. I am telling you this not to freak you out but to hopefully help you or someone else out there. So I wonder if that spot in my chest was a sign of things to come. My reoccurance was detected by my thyroglobulin level. It spiked up while I was on my thyroid medication. It ends up that I have a bone met on my vertebrae. I was treated with RAI again and the my lungs lit up. So we think I also have diffuse microscopic metastises to the lungs. Both the bone and lung mets are rare for a case like myself. I was stage 1 with no lymph node involvement.

    Curious on what type of thyroid cancer you have?
    Hope this helps. Please let me know if you have any questions and I'll be glad to help.

    CURIOUS AND CONCERND
    YOU SAID YOUR THYROGLOBULIN SPIKED?I JUST GOT MY LABS BACK ON FRI, AND THEY BOTH SHOWED HIGH TG-4.6 AND TGAB 5.3 WHAT DOES THAT MEAN? I ALSO HAD I131SCAN DONE IN FEB AND THEY HAD ME COME BACK THE NEXT DAY TO REPEAT AND THE TECH TOLD ME THEY SAW SUSPECIOUS AREA ON MY STOMACH AND BOWEL BUT WHEN I WENT BACK TO MY ONCOLOGIST FOR RESULTS HE SAID IT WAS NOTHING??? ALSO BACK IN JULY 09 A CT OF MY CHEST SHOWED AREA IN MY MEDISTINAL AREA THAT COULD NOT BE RULED OUT AS LYMPHOMA???? IM CONFUSED???? ANY INFO WOULD BE HELPFUL

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