When do I get to be "cancer free"?

jfletcher
jfletcher Member Posts: 2
in Thyroid Cancer #1
Hello. I'm new here. Have been posting on the thyca board, but figured I'd expand a little. (You guys aren't enemies, are you? :)

Just got back from my follow-up WBS, six days after my 75mc RAI dose. For some
reason I was expecting that nothing would light up this time and they'd be able
to say that the RAI had worked and I was "cancer-free."

I guess that was a little naive of me, not understanding the process fully.

The NM Dr. wasn't there, so the techs tried to explain to me, and this is what I
took out of it: The fact that this scan looked essentially the same as the last
week's is good, because this scan was after getting about 30 times more
radiation. It was really a test to make sure no new areas lit up with the added
radiation, which would have indicated the spread of cancer.

I also assume it means I have a lot less thyroid tissue (and therefore potential
thyroid cancer) than I had a week ago, because a higher dose of radiation is now
showing about the same amount of hot spots as last week's teeny dose.

But when can I go from "a lot less" to "none"? When can I say for certain that
all of the cancer has been blasted?

The tech told me I probably won't have another scan for a year. Do I have to
wait a year to say I'm cancer-free?

I left a message for my Endo hoping to get a more satisfactory explanation of
the process. In the meantime, I'll rely on you guys.

Comments

  • Baldy
    Baldy Member Posts: 243
    #2
    RAI Scans
    Does this sound familiar?

    LID for two weeks

    Day 1: Thyrogen shot
    Day 2: Thyrogen shot & very small dose of Iodine-123 or Iodine-131.
    Day 3: Whole Body Scan
    Day 4: Large dose of Iodine-131
    Day 11: Whole Body Scan

    If this {which is what I had done last month} or something very much like it is what you just had done, then the first WBS was just to determine the size of the large dose of I-131 you got on day 4.

    Both scans should look pretty much the same or maybe the second scan will show something the first missed. The WBS you're taking is looking to see where gamma rays are eminating from your body. The day 2 dose {for me it was 2mCi} is much less strong than the day 4 dose {for me it was also 75 mCi}, so it will cause far fewer gamma rays {in my case something like 1/20th}. So they do the day 11 scan in order to see if the day 2 scan missed anything. The large dose will take maybe as long as 6 to 9 months to finish killing off thyroid cells, assuming it kills them all.

    "When do I get to be 'cancer free'?" No one has been able to answer that for me, so I doubt anyone will be able to answer it for you. There's no way that you can know if there isn't some very small undetectable metastasis lurking somewhere. Your endo should have you come back for some sort of checkup {blood work, sonogram, WBS} twice a year for a number of years and then once a year there after. Thyroid cancer is so slow moving it could be a long time before a recurrence should there be one.

    You NEED to get these answers from your endocrinologist. Ask him about what your follow up care will be both short and long term.

    Alan
  • jfletcher
    jfletcher Member Posts: 2
    #3
    Baldy said:

    RAI Scans
    Does this sound familiar?

    LID for two weeks

    Day 1: Thyrogen shot
    Day 2: Thyrogen shot & very small dose of Iodine-123 or Iodine-131.
    Day 3: Whole Body Scan
    Day 4: Large dose of Iodine-131
    Day 11: Whole Body Scan

    If this {which is what I had done last month} or something very much like it is what you just had done, then the first WBS was just to determine the size of the large dose of I-131 you got on day 4.

    Both scans should look pretty much the same or maybe the second scan will show something the first missed. The WBS you're taking is looking to see where gamma rays are eminating from your body. The day 2 dose {for me it was 2mCi} is much less strong than the day 4 dose {for me it was also 75 mCi}, so it will cause far fewer gamma rays {in my case something like 1/20th}. So they do the day 11 scan in order to see if the day 2 scan missed anything. The large dose will take maybe as long as 6 to 9 months to finish killing off thyroid cells, assuming it kills them all.

    "When do I get to be 'cancer free'?" No one has been able to answer that for me, so I doubt anyone will be able to answer it for you. There's no way that you can know if there isn't some very small undetectable metastasis lurking somewhere. Your endo should have you come back for some sort of checkup {blood work, sonogram, WBS} twice a year for a number of years and then once a year there after. Thyroid cancer is so slow moving it could be a long time before a recurrence should there be one.

    You NEED to get these answers from your endocrinologist. Ask him about what your follow up care will be both short and long term.

    Alan

    That's pretty much what I
    That's pretty much what I did, minus the thyrogen.

    The 6-9 months is the thing no one told me. I assumed I'd need to keep getting checked to make sure it didn't come back, but I didn't realize it takes that long to kill the thyroid/cancer cells in the first place. I guess I figured if I'm no longer radioactive to others after 7-10 days that the RAI must be finished doing it's job inside me.

    So I guess the fact that there was no evidence of metastes today was the best I could hope for, right?
  • Baldy
    Baldy Member Posts: 243
    #4
    jfletcher said:

    That's pretty much what I
    That's pretty much what I did, minus the thyrogen.

    The 6-9 months is the thing no one told me. I assumed I'd need to keep getting checked to make sure it didn't come back, but I didn't realize it takes that long to kill the thyroid/cancer cells in the first place. I guess I figured if I'm no longer radioactive to others after 7-10 days that the RAI must be finished doing it's job inside me.

    So I guess the fact that there was no evidence of metastes today was the best I could hope for, right?

    Scans
    Yes, the same with me. You should still call your endo and get answers from him. I may have something confused or your situation may be different.

    Alan
  • nasher
    nasher Member Posts: 505 Member
    #5
    Baldy said:

    RAI Scans
    Does this sound familiar?

    LID for two weeks

    Day 1: Thyrogen shot
    Day 2: Thyrogen shot & very small dose of Iodine-123 or Iodine-131.
    Day 3: Whole Body Scan
    Day 4: Large dose of Iodine-131
    Day 11: Whole Body Scan

    If this {which is what I had done last month} or something very much like it is what you just had done, then the first WBS was just to determine the size of the large dose of I-131 you got on day 4.

    Both scans should look pretty much the same or maybe the second scan will show something the first missed. The WBS you're taking is looking to see where gamma rays are eminating from your body. The day 2 dose {for me it was 2mCi} is much less strong than the day 4 dose {for me it was also 75 mCi}, so it will cause far fewer gamma rays {in my case something like 1/20th}. So they do the day 11 scan in order to see if the day 2 scan missed anything. The large dose will take maybe as long as 6 to 9 months to finish killing off thyroid cells, assuming it kills them all.

    "When do I get to be 'cancer free'?" No one has been able to answer that for me, so I doubt anyone will be able to answer it for you. There's no way that you can know if there isn't some very small undetectable metastasis lurking somewhere. Your endo should have you come back for some sort of checkup {blood work, sonogram, WBS} twice a year for a number of years and then once a year there after. Thyroid cancer is so slow moving it could be a long time before a recurrence should there be one.

    You NEED to get these answers from your endocrinologist. Ask him about what your follow up care will be both short and long term.

    Alan

    hard to answer
    There is no real "cancer free"

    what you hope for is a "Clean Scan"

    yesterday I had my 1 year out scan and i got a "Clean Scan"

    what a clean scan means according to my endo is

    as far as the detection devices avalible there is no thyroid tissue left in the body
    my blood tests are
    thyroglobolin is < 0.10 ng/mL
    thyroglobulin antibodies <20 IU/mL
    and no radioactive iodine uptake from trace dose.

    So thats the answer you dont get a "cancer free" you get "Clean Scan" and that you are in remission there is always a chance of reoccourance...

    So I am celibrating my "Clean Scan" on May 12th 2011.

    good luck on you treatment

    Craig
  • Nancyboy
    Nancyboy Member Posts: 2
    #6
    nasher said:

    hard to answer
    There is no real "cancer free"

    what you hope for is a "Clean Scan"

    yesterday I had my 1 year out scan and i got a "Clean Scan"

    what a clean scan means according to my endo is

    as far as the detection devices avalible there is no thyroid tissue left in the body
    my blood tests are
    thyroglobolin is < 0.10 ng/mL
    thyroglobulin antibodies <20 IU/mL
    and no radioactive iodine uptake from trace dose.

    So thats the answer you dont get a "cancer free" you get "Clean Scan" and that you are in remission there is always a chance of reoccourance...

    So I am celibrating my "Clean Scan" on May 12th 2011.

    good luck on you treatment

    Craig</p>

    Congratulations
    Hi. I just joined this website today and was looking around when I saw your comment of celebrating your clean scan on May 12. That was 3 days shy of my birthday (66th) so it caught my eye. My husband has anaplastic thyroid cancer and finished his radiation and chemo last Tues. so is starting the worst part of it. I've found lots of helpful comments already which is encouraging. Before his cancer I would think "oh, that poor person with cancer..." and then go on about my life. Now, my heart truly goes out to everyone who has this terrible disease. I wish you the best and hope for your continued clean scans. Nancy
  • sunnyaz
    sunnyaz Member Posts: 582
    #7
    Nancyboy said:

    Congratulations
    Hi. I just joined this website today and was looking around when I saw your comment of celebrating your clean scan on May 12. That was 3 days shy of my birthday (66th) so it caught my eye. My husband has anaplastic thyroid cancer and finished his radiation and chemo last Tues. so is starting the worst part of it. I've found lots of helpful comments already which is encouraging. Before his cancer I would think "oh, that poor person with cancer..." and then go on about my life. Now, my heart truly goes out to everyone who has this terrible disease. I wish you the best and hope for your continued clean scans. Nancy

    Hi Nancyboy
    I haven't heard of anyone on the boards having the Anaplstic variety of Thyroid cancer. I understand it is a very rare form and very serious. What is your husbands prognosis? Have they given him any indication as to how he will respond to the Radiation and Chemo? What stage was his cancer when they removed it? How is he doing? Sorry for all the questions.
    Blessings to you and your husband,
    Julie-SunnyAZ
  • puppetmn
    puppetmn Member Posts: 4
    #8
    cancer free
    I'm going into my fifth year of fighting this cancer. I have a great Endo, Thyrdorid Cancer Specialist. I've had 3 surgeries and 2 rounds of very high doseage RAI both over 180MCG's. I also had 33 treatements of external beam radiation. My edno says you are never rid of thyroid cancer , you can only+ suppress it. and hope it doesen't take off again. after all of this I have become immune to the RAi treatement now and it has matastized to my lungs, but that is the next battle>. So all this is to say don't get down or depressed or wonder why you can't beat this, or why won't it go away... You can beat it you can control it either through meds or surgeries, or chemo,, but you just have to know that you will live with this for the rest of your life and adjust accordingly to it. This disease that is the "best form of cancer to have " will not beat me nor should you allow it to get you down or wonder why you can't beat it..hang in there and read and talk to any and everyone you can to understand what is going on...Good luck.....

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