Is I131 treatment necessary?

janelouise
janelouise Member Posts: 10
edited March 2014 in Thyroid Cancer #1
Hi again,
I have just come back from my appointment regarding I131 treatment and the doctor surprised me by saying that he really didn;t think that it was necessary. I have had a total thyroidectomy (2 surgeries) and only 1 tumour was found. (1.8cm papillary)I am 54 years old. I was prepared to have the treatment and the doctor says that he is OK with doing it but doesn;t think that it is necessary. He said that my cancer will NOT come back. Has anyone else had to face this decision? I would love to hear your experiences.

Thanks, Jane

Comments

  • CindyC
    CindyC Member Posts: 27
    #2
    I think that you should seek the opinion of an Oncologist. I had Papillary and have had two treatments. This has been an on going thing for me for five years now. You will also feel more comfortable with another opinion.
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #3
    I had a thyroidectomy in October of last year and they found papillary cancer. I had the other half removed 13 years ago and at my follow-up they said not to worry that they found an incidental finding of cancer. I went to my endo for 13 years and last year he said he felt something and sent me for all the tests. They removed the rest of the thyroid. I asked if I could wait until after the first of the year for the radioactive iodine, and the surgeon in NY said yes. Now I have been off medication for 3 weeks and feel awful. The Surgeon kinda left it up to me as to wether or not I even have it done. She felt she got the cancer out of there, and there was no spread to the lymph nodes. I am really nervous about the iodine treatment and being isolated from my family. Some people say you have to stay away from others for 48 hours and other's say 2 weeks!!! Then I also heard horror stories about years down the road what can happen as a result of taking this treatment. I honestly don't know what to believe anymore. Where is your Dr. that felt you didn't need the RAI treatment? I'm in CT how about you...Sincerely, Paula
  • janelouise
    janelouise Member Posts: 10
    #4
    AuthorUnknown said:

    I had a thyroidectomy in October of last year and they found papillary cancer. I had the other half removed 13 years ago and at my follow-up they said not to worry that they found an incidental finding of cancer. I went to my endo for 13 years and last year he said he felt something and sent me for all the tests. They removed the rest of the thyroid. I asked if I could wait until after the first of the year for the radioactive iodine, and the surgeon in NY said yes. Now I have been off medication for 3 weeks and feel awful. The Surgeon kinda left it up to me as to wether or not I even have it done. She felt she got the cancer out of there, and there was no spread to the lymph nodes. I am really nervous about the iodine treatment and being isolated from my family. Some people say you have to stay away from others for 48 hours and other's say 2 weeks!!! Then I also heard horror stories about years down the road what can happen as a result of taking this treatment. I honestly don't know what to believe anymore. Where is your Dr. that felt you didn't need the RAI treatment? I'm in CT how about you...Sincerely, Paula

    Hi Paula,
    The doctor who said that I didn't need the treatment is here in Hamilton, Ontario, Canada. He said that I didn't need the I131 after spending about 1 minute looking at the pathology of my first surgery. (where the cancer was found) I have decided to go ahead with the I131 as recommended by my surgeon who has followed my case for the past year. Like you, I am currently off meds and on a low iodine diet. Like you, I did not have any lymph node involvement. The reason tht I am doing the I131 is for extra insurance against a reoccurence. I have been reading the literature and have decided that this option is best for me. I would have been happier if the doctor in Hamilton had either agreed with me or at least spent some time discussing the issue. I hear that the treatment isn;t bad and because my dose will be fairly low I am not worried about it triggering additional health problems. As far as isolation, it seems that I will not have to stay in the hospital but will be in isolation at home for about 8 days. I only have one child living at home right now and he is 18 so will be able to fend for himself along with his father will I stay in isolation. I hope this information helps. Please keep in touch, Jane
  • krystamh
    krystamh Member Posts: 2
    #5
    janelouise said:

    Hi Paula,
    The doctor who said that I didn't need the treatment is here in Hamilton, Ontario, Canada. He said that I didn't need the I131 after spending about 1 minute looking at the pathology of my first surgery. (where the cancer was found) I have decided to go ahead with the I131 as recommended by my surgeon who has followed my case for the past year. Like you, I am currently off meds and on a low iodine diet. Like you, I did not have any lymph node involvement. The reason tht I am doing the I131 is for extra insurance against a reoccurence. I have been reading the literature and have decided that this option is best for me. I would have been happier if the doctor in Hamilton had either agreed with me or at least spent some time discussing the issue. I hear that the treatment isn;t bad and because my dose will be fairly low I am not worried about it triggering additional health problems. As far as isolation, it seems that I will not have to stay in the hospital but will be in isolation at home for about 8 days. I only have one child living at home right now and he is 18 so will be able to fend for himself along with his father will I stay in isolation. I hope this information helps. Please keep in touch, Jane

    Dear Jane (and Paula),
    I had my thyroidectomy when I was 14 (I'm now 23) and had I-131 treatments almost every year until 2 years ago. Now, I'm sure side effects differ with age, so the effects I felt may be completely different from either of yours. But the treatments DID help in my case (my endocrinologist kept finding disease in lymph nodes, and some spread to my lungs). It was a good way for the doctor to be sure all the disease was gone, without having to invade my body with surgery. Even with the highest dosage he ever gave me (around 500 mci, as I recall) I was out of the hospital in 24 hours. The worst physical side effect was nausea (for which I have a pretty low tolerance compared to other people). Ultimately, my doctor decided more treatments wouldn't be a good idea because after a certain number, the possible negative outcomes start to outweigh the positive.

    Anyway, I don't know if that's helpful. Maybe you've already had your treatment! If so, I hope everything went well. And if you're interested, my mom found a Low-Iodine cookbook online - all the recipes fit the diet! Let me know and I can try to find it for you...

    Krysta
  • janelouise
    janelouise Member Posts: 10
    #6
    krystamh said:

    Dear Jane (and Paula),
    I had my thyroidectomy when I was 14 (I'm now 23) and had I-131 treatments almost every year until 2 years ago. Now, I'm sure side effects differ with age, so the effects I felt may be completely different from either of yours. But the treatments DID help in my case (my endocrinologist kept finding disease in lymph nodes, and some spread to my lungs). It was a good way for the doctor to be sure all the disease was gone, without having to invade my body with surgery. Even with the highest dosage he ever gave me (around 500 mci, as I recall) I was out of the hospital in 24 hours. The worst physical side effect was nausea (for which I have a pretty low tolerance compared to other people). Ultimately, my doctor decided more treatments wouldn't be a good idea because after a certain number, the possible negative outcomes start to outweigh the positive.

    Anyway, I don't know if that's helpful. Maybe you've already had your treatment! If so, I hope everything went well. And if you're interested, my mom found a Low-Iodine cookbook online - all the recipes fit the diet! Let me know and I can try to find it for you...

    Krysta

    Hi Krysta,

    Thanks for your message. I did have the I131 ablation treatment and it wasn;t too bad. I did find that I suffered from nausea as well. I decided to have it as I too felt that it was the best way for the blood work and scans to be accurate. I just want to be on top of this thyroid cancer. Even though everyone says that it is an OK cancer I still am not comfortable with the whole idea of having cancer. It is so unpredictable. I found the cookbook online as well and used it during the two weeks before my treatment. It is sure great to be back on regular food again. At 23, I hope that you remain cancer free.

    Take care of yourself,

    Jane

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