Follow Up Care - Papillary thyroid cancer

John38
John38 Member Posts: 5
edited March 2014 in Thyroid Cancer #1
Papillary thyroid cancer. In 1999, I had my thyroid removed and most of the lymph nodes on the right side of my neck. I had 2 consecutive years of I 131 treatments. In 2001, the scan/uptake was negative. How often do you go back for the follow up scan/uptake since being "negative". I am dreading going back for those tests because of all the anxiety it creates.
Thanks in advance.

Comments

  • sjspeds
    sjspeds Member Posts: 21
    #2
    Do you see your endocrine doctor every 6 months, or every yr. They should running blood tests and advising you for further scans. I go in every 6 months to my endocrine doctor and get an assessment.
  • John38
    John38 Member Posts: 5
    #3
    sjspeds said:

    Do you see your endocrine doctor every 6 months, or every yr. They should running blood tests and advising you for further scans. I go in every 6 months to my endocrine doctor and get an assessment.

    I go every 6 months to my endocrine doctor for blood tests and assesment. I realize that every case is unique in some way, but I was just curious to see how often other people go back for follow up scans. Thanks.
  • cherrie
    cherrie Member Posts: 38
    #4
    John38 said:

    I go every 6 months to my endocrine doctor for blood tests and assesment. I realize that every case is unique in some way, but I was just curious to see how often other people go back for follow up scans. Thanks.

    I go every 3 months for regular blood test and every 6 months for a special blood test and every year for body scan
  • sjspeds
    sjspeds Member Posts: 21
    #5
    I have Papillary Thyroid CA also. I got my thyroid removed last Jan. along with 5 or more lymph nodes. I had the radioactive iodine test a few months following the surgery and the scan came back neg. I just saw my doctor today and she felt some lumps on my lymph nodes in my neck. She said don't get worried about it.. But should I? In a month I am going to have the scan again. I asked her how often I should get a scan. She said its Controversy, but usually not even every yr. cause they don't want to expose us to too much radiation. Have you ever had any lumps felt on your neck following your thyroid removal? Thanks.. SJS
  • John38
    John38 Member Posts: 5
    #6
    sjspeds said:

    I have Papillary Thyroid CA also. I got my thyroid removed last Jan. along with 5 or more lymph nodes. I had the radioactive iodine test a few months following the surgery and the scan came back neg. I just saw my doctor today and she felt some lumps on my lymph nodes in my neck. She said don't get worried about it.. But should I? In a month I am going to have the scan again. I asked her how often I should get a scan. She said its Controversy, but usually not even every yr. cause they don't want to expose us to too much radiation. Have you ever had any lumps felt on your neck following your thyroid removal? Thanks.. SJS

    If I feel my neck over where the incision was, I feel some scar tissue that has built up from the healing process. Where the doctor felt lumps, is that in the vicinity of the incision? It may just be some scar tissue... Trust your doctor. At least from my experience, they usually don't say not to worry unless they really believe it.
  • yoko118
    yoko118 Member Posts: 8
    #7
    I was diagnosed a papillary thyroid cancer in 1998, and had a whole tryroidectomy in the same year. In the year of 2002, it recurred in my right lung and right side of lymph nodes, and had two surgeries in the same year. I had three I-131 treatments and one radiation treatment all together. i took scan/uptake in the middle of January this year, and it came out negative. i am going to take an another one in April. Hardest part was that i had to go on the law iodine diet for about three weeks or so before the test. I also will take PET scan some time this year.
  • Eftov
    Eftov Member Posts: 3
    #8
    Hi, John. Having thyroid cancer means life long follow-up, but not necessarily with annual scans. My understanding is that after two or three negative scans and no increase in thyroglobulin levels, you might be followed with only bloodwork and perhaps ultrasound. I have heard some folks say they are scanned every five years. It depends on your individual case and how aggressive in treatment your doctor is. Lifelong follow-up is necessary because cancer can recur decades later, although it usually does not. Just think of the peace of mind you will get every time your doctor tells you that your scan (or other test) is "unremarkable".
  • John38
    John38 Member Posts: 5
    #9
    Eftov said:

    Hi, John. Having thyroid cancer means life long follow-up, but not necessarily with annual scans. My understanding is that after two or three negative scans and no increase in thyroglobulin levels, you might be followed with only bloodwork and perhaps ultrasound. I have heard some folks say they are scanned every five years. It depends on your individual case and how aggressive in treatment your doctor is. Lifelong follow-up is necessary because cancer can recur decades later, although it usually does not. Just think of the peace of mind you will get every time your doctor tells you that your scan (or other test) is "unremarkable".

    Hi Eftov, Thank you so much!! You made me feel better!
  • mdk
    mdk Member Posts: 3
    #10
    i have to get tested every year, but it depends on your onocologist
  • Unknown
    Unknown
    #11
    This comment has been removed by the Moderator
  • RYoung
    RYoung Member Posts: 2
    edited July 2020 #12
    Papillary Cancer One Year Follow Up

    I had a TT in December 2019.  I have just completed my one year body scan and blood work.

    My endo informed me that my body scan was negative and they were waiting on the blood results.

    Its been a week and the results are still not in.  Should I be worried?  How likely the blood test come back positive even with a negative body scan.

  • CSN_Bill
    CSN_Bill admin Posts: 28
    edited July 2020 #13
    RYoung said:

    Papillary Cancer One Year Follow Up

    I had a TT in December 2019.  I have just completed my one year body scan and blood work.

    My endo informed me that my body scan was negative and they were waiting on the blood results.

    Its been a week and the results are still not in.  Should I be worried?  How likely the blood test come back positive even with a negative body scan.

    Old Thread

    Hi RYoung, 

    Since you have not recieved any responses in a few days, I thought I'd try to help. Please notice the dates of the previous posts. This is a very old thread within the Thyroid Cancer Discussion Board. 

    It may be seen by more members if you were to start a new thread, or "Forum Topic". Simply go to the main link for the Thyroid Cancer Discussion Board and look for the link towards the top that says "Add New Forum Topic". This way your question will go to the top of a new page where others can see it. 

    If you have any questions at all, feel free to reach out to the Support Team at CSNSupportTeam@cancer.org

    Regards,

    Bill
    CSN Support Team

     

  • aj59
    aj59 Member Posts: 3
    edited December 2020 #14
    What do the numbers really mean?

    Hi all. I am new to this discussion but excited to see how busy it is! I was dx. with Thyroid cancer 10 years ago & had a total thyroidectomy. My health has never been the same. Last year I was diagnosed with Primary CNS Lymphoma aka Non Hodgkins Disease & have been wondering what, if any, connections there are between the two. My oncologist says they are not related but since I finished chemo 3 months ago, my TSH levels keep changing as do my doses of Synthroid. Prior to chemo, I maintaind at .88 mcg of synthroid. Not now however...I've just had my dosage changed to .75 mcg.

     Has anyone else experienced anything like this?

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