Unsettled after scan results

amorriso
amorriso Member Posts: 185
in Thyroid Cancer #1
Ok - finished my RAI last week, had my scans, and went for results today. Here is what the doctor said: The scans showed no uptake in the neck etc. Which could be good - meaning the tumors are gone, but also could be very bad meaning the tumors/lymph nodes are resistant to uptake of Iodine. In which case he says there is nothing they can do for me.

When I asked him to explain further - he simply said we would recheck in 6 months by checking the thyroglobin markers? He wasnt extremely clear. But if its resistant to iodine then......he didnt exactly say......

I have to be rather forceful in getting proper treatment and follow up here - so....

1. Exactly what blood work should I be having - I want to do it every 6 - 8 weeks.
2. Opinions on his view of the results????? And future options???

I think he needs a lesson in sensitivity...

All advice welcomed

Andree

Comments

  • alapah
    alapah Member Posts: 287
    #2
    Hi Andree,
    I just had a WBS
    Hi Andree,
    I just had a WBS last week too. Still waiting to hear the results. Not sure how much you know about these things so please forgive me if I am telling you things you already know...

    Thyroglobulin (Tg) is produced by thyroid cells so thyroid cancer patients have periodic blood draws done to test whether it is present in the body. Having removed the entire thyroid gland and dosed with RAI to kill any remaining thyroid cells, the goal is for a patient to show a thyroglobulin level of 0. If it is more than zero, some thyroid cells remain, though the presence of thyroglobulin is not, in itself, an indicator of cancer. They could be non-cancerous thyroid cells lurking. Some people, like me, have thyroglobulin antibodies (tgAB) which really complicate this whole deal as the antibodies mess with the accuracy of the Tg reading. In fact, in my case, they figure it's so screwy as to make the Tg reading not so helpful but they still do Tg tests. They do look at trends which can tell them something. In fact, I had blood drawn after my scan last Friday to run a Tg test. Another important thing to know about Tg labs is that you should try to get them done at the same lab every time, as different labs have different assays. My endo always sends mine to USC. Wish I got to visit sunny CA too, but alas, it's just a vial of my blood that makes the trip. USC has a primo program and they bank your blood so each time a new sample is sent they also run the previous banked sample to have a good comparison. My doc banked blood there before my thyroid was removed so we have a continuous run at one lab.

    I have an advanced case of thyroid cancer and even in my case, I believe I have Tg draws every six months, maybe every three. Not weeks apart as you are asking about. There is a lot of great info about understanding labs and other thyroid cancer related issues on the Thyca.org site. Check it out if you haven't already. I have found it to be very helpful. They also have support boards at Yahoo Groups.

    My docs suspect I am no longer iodine avid so we shall see what my scan shows from this last round. My 5millicurie dose of RAI six months ago showed no uptake. There are trials being done around the country to test chemo and other protocols for thyca that is not treatable with RAI. Also, papillary thyroid cancer is generally very slow growing so even those with mets can do fairly well. But don't jump to that step until you have more info. One step at a time. Yes, it's good to be educated but don't panic or get yourself worked up at this point if you can help it. I don't know how common it is to become iodine resistant. I think the odds are in your favor that a clear scan is simply good news.
    best to you!
    eileen
  • amorriso
    amorriso Member Posts: 185
    #3
    alapah said:

    Hi Andree,
    I just had a WBS
    Hi Andree,
    I just had a WBS last week too. Still waiting to hear the results. Not sure how much you know about these things so please forgive me if I am telling you things you already know...

    Thyroglobulin (Tg) is produced by thyroid cells so thyroid cancer patients have periodic blood draws done to test whether it is present in the body. Having removed the entire thyroid gland and dosed with RAI to kill any remaining thyroid cells, the goal is for a patient to show a thyroglobulin level of 0. If it is more than zero, some thyroid cells remain, though the presence of thyroglobulin is not, in itself, an indicator of cancer. They could be non-cancerous thyroid cells lurking. Some people, like me, have thyroglobulin antibodies (tgAB) which really complicate this whole deal as the antibodies mess with the accuracy of the Tg reading. In fact, in my case, they figure it's so screwy as to make the Tg reading not so helpful but they still do Tg tests. They do look at trends which can tell them something. In fact, I had blood drawn after my scan last Friday to run a Tg test. Another important thing to know about Tg labs is that you should try to get them done at the same lab every time, as different labs have different assays. My endo always sends mine to USC. Wish I got to visit sunny CA too, but alas, it's just a vial of my blood that makes the trip. USC has a primo program and they bank your blood so each time a new sample is sent they also run the previous banked sample to have a good comparison. My doc banked blood there before my thyroid was removed so we have a continuous run at one lab.

    I have an advanced case of thyroid cancer and even in my case, I believe I have Tg draws every six months, maybe every three. Not weeks apart as you are asking about. There is a lot of great info about understanding labs and other thyroid cancer related issues on the Thyca.org site. Check it out if you haven't already. I have found it to be very helpful. They also have support boards at Yahoo Groups.

    My docs suspect I am no longer iodine avid so we shall see what my scan shows from this last round. My 5millicurie dose of RAI six months ago showed no uptake. There are trials being done around the country to test chemo and other protocols for thyca that is not treatable with RAI. Also, papillary thyroid cancer is generally very slow growing so even those with mets can do fairly well. But don't jump to that step until you have more info. One step at a time. Yes, it's good to be educated but don't panic or get yourself worked up at this point if you can help it. I don't know how common it is to become iodine resistant. I think the odds are in your favor that a clear scan is simply good news.
    best to you!
    eileen

    Got a second opinion
    Thanks for you post. I went to my surgeon to get his opinion of the scans. He was extremely pleased with the way it looked. He's confident that the clear scan means he was able to clear out all of the affected nodes.

    He'll do some bloodwork in June before I head off on vacation, and again when I get back, but nothing major for 6 months.

    So I will do as he says - go enjoy life.

    Cheers

    Andree

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