RAI - second thoughts

teamwink

I am having second thoughts about the RAI... My tumor was right on the cusp of where it is recommended to do RAI, as it was right at 2 cm. This delay in thyrogen has made me reconsider whether I should do the RAI at all. If one does not do RAI, how can they tell if the cancer returns? Is it harder to treat if it does, and you don't have RAI earlier? Just curious.

sunnyaz

RAI -First thoughts
Are you B-RAF positive? Do you know? Forty-three percent of us are, and those aren't bad ods. If you are, you WILL have metastasis, no if's about it. I will tell you again that my Endo told me RAI wasn't needed and I questioned it. But he's the doctor, right? No, you must make your own decisions. I had one very small tumor that was smaller than yours. I knew I had something wrong with my thyroid more than 9 months earlier before my node was palpable because of my symptoms. My blood tests were normal so my PCP did nothing about it. I kept on researching and pressing the issue. He thought I was a hypochondriac. By the way, I was proactive because I (1) know my body very well and (2) I am in the health care profession.

It's your choice, but if it were me and I could go back in time; knowing what I know now, I would have insisted that my Endo give me RAI. I may have saved myself the misery of two more surgeries and a second RAI, which is much worse than one. I do know that the more they cut you open the more risk there is due to the scar tissue. Harder to treat, I don't know, but not worth the risk. One RAI treatment is better than the option of having to go through metastasis to the Lymph nodes, bones, lungs and possibly brain.
Blessings,
Julie-SunnyAZ

nasher

to do or not to do
Myself I was a definate yes, some of the doctors said I didn't NEED it.

You need to make your own discision but here is my thoughts on it

1) when they did your TT they did not remover EVERYTHING
2) how do you know whats left didnt have a 0.01mm (or less) of cancer
3) if they kill off the remaining thyroid tissue its easyer to spot if any returns.
4) if it dose come back it may be alot harder to treat (eithor way)

right now I am 1 year + out and my scan came back clean and it shows I have NO remaing thyroid tissue (that can be detected) so in the future if the blood tests show ANY thyroid tissue they can imedatly shift gears cause they know it will be cancer, but if you still have thyroid tissue remaining the numbers may not change enough for them to realize you have cancer again and it may delay the treatment.

I did my round with no thyrogen (when they did the RAI treatment), my 1 year scan was with thyrogen.

How long is the delay in thyrogen?
Can you reschedule your schedule for the new time?
do you have the BRAF mutation?

realize if thyroid cancer shows up again it may not be in the neck so anything that can reduce the chance of getting it again is a plus for me.

eithor way its your choice.

Craig

teamwink

nasher said:

to do or not to do
Myself I was a definate yes, some of the doctors said I didn't NEED it.

You need to make your own discision but here is my thoughts on it

1) when they did your TT they did not remover EVERYTHING
2) how do you know whats left didnt have a 0.01mm (or less) of cancer
3) if they kill off the remaining thyroid tissue its easyer to spot if any returns.
4) if it dose come back it may be alot harder to treat (eithor way)

right now I am 1 year + out and my scan came back clean and it shows I have NO remaing thyroid tissue (that can be detected) so in the future if the blood tests show ANY thyroid tissue they can imedatly shift gears cause they know it will be cancer, but if you still have thyroid tissue remaining the numbers may not change enough for them to realize you have cancer again and it may delay the treatment.

I did my round with no thyrogen (when they did the RAI treatment), my 1 year scan was with thyrogen.

How long is the delay in thyrogen?
Can you reschedule your schedule for the new time?
do you have the BRAF mutation?

realize if thyroid cancer shows up again it may not be in the neck so anything that can reduce the chance of getting it again is a plus for me.

eithor way its your choice.

Craig

Thanks!
I appreciate the information - it is actually more helpful than other things I've seen. How do I know if I am BRAF +? My doc never mentioned this to me.

sunnyaz

teamwink said:

Thanks!
I appreciate the information - it is actually more helpful than other things I've seen. How do I know if I am BRAF +? My doc never mentioned this to me.

Tissue Testing
They need to test the tissue they removed. This may not be possible at this point, but it doesn't hurt to ask your doctor if there is any way to test now.
Julie-SunnyAZ

teamwink

sunnyaz said:

Tissue Testing
They need to test the tissue they removed. This may not be possible at this point, but it doesn't hurt to ask your doctor if there is any way to test now.
Julie-SunnyAZ

BRAF
If I'm reading a path report, would the test be called something else? At this point, and as I learn more about what my doc failed to tell me, it would not surprise me that this was not tested, but I'd still like to try to find out.

sunnyaz

teamwink said:

BRAF
If I'm reading a path report, would the test be called something else? At this point, and as I learn more about what my doc failed to tell me, it would not surprise me that this was not tested, but I'd still like to try to find out.

Link to Wikipedia
Check out this link, it will explain what this gene is and the long name for it.

http://en.wikipedia.org/wiki/BRAF_(gene)

Good chance you were not tested. Most aren't right now, but it will become a standard very soon.

Blessings,
Julie-SunnyAZ