Very confusing one year after TT & RAI

Lilypr

It seems that I'm lost and I need advice. I got my TT on April 13th 2009 and RAI on May same year. Now finally after a year and half I get to prepare for my whole body scan. The problem I'm facing is that none of my doctors told me that despite I don't have any more cancer I need to go under RAI, when I asked the tech the reasons she just told me that it'll be "only" 3 milicuries for diagnosis. Why is that?? I was told by my Onco after the first RAI and first whole body scan than I was cured, and now for my first year follow up I need to go all over again?? I've tried to reach my Onco but he's out the city for the next two weeks. =(

Besides, you know what it feels when we need to be without medication, the diet, the mood swings, the feeling of loneliness, the feeling when you're on isolation after RAI, the rest of many symptoms, to be told by your love ones that "it's all on your head"?. The only one that stills very supportive is my boyfriend, but yet I need information.

In this part of my journey (after CA diagnosis) is the first time I feel so lost, because the lack of information. Excuse my English, is not my first language.

Thanks for your time and Be WELL.

bellas

Hi there, the RAI you will
Hi there, the RAI you will be taking for your one year follow up whole body scan is diagnostic only. It's so that they can see if any thyroid cancer is present in your body on the scan. No diet, no isolation, nothing. It's just a tiny amount to highlight any active thyroid cancer cells in your body. Hope this helps.

Lilypr

bellas said:

Hi there, the RAI you will
Hi there, the RAI you will be taking for your one year follow up whole body scan is diagnostic only. It's so that they can see if any thyroid cancer is present in your body on the scan. No diet, no isolation, nothing. It's just a tiny amount to highlight any active thyroid cancer cells in your body. Hope this helps.

Hi Bellas...
Thanks for your reply. That's the problem, when the tech (in Nuclear Medicine) gave me the instructions she told me I have to get prepared for the RAI yes to diet, yes to isolation, I'm already withdrawn from the medication, yesterday (monday) I began with the diet the next week I get blood work and then the RAI.

Thanks again for your info, and the same information you gave me that body scan is diagnostic only, yes, same. Wish me luck.

Finnegan1

Lilypr said:

Hi Bellas...
Thanks for your reply. That's the problem, when the tech (in Nuclear Medicine) gave me the instructions she told me I have to get prepared for the RAI yes to diet, yes to isolation, I'm already withdrawn from the medication, yesterday (monday) I began with the diet the next week I get blood work and then the RAI.

Thanks again for your info, and the same information you gave me that body scan is diagnostic only, yes, same. Wish me luck.

Good luck
Good luck with your scan. And I think we all know that feeling of mood swings, loneliness, and depression at times. I am nearing the end of my LID, and think I am about to be told I have to re-do it because of scheduling problems. So, great, here I go again. But, like Nasher said once before, small price to pay, if it beats the cancer!
I wish you luck, be well, and keep us informed of the outcome if you feel like sharing!

jones512

Lilypr said:

Hi Bellas...
Thanks for your reply. That's the problem, when the tech (in Nuclear Medicine) gave me the instructions she told me I have to get prepared for the RAI yes to diet, yes to isolation, I'm already withdrawn from the medication, yesterday (monday) I began with the diet the next week I get blood work and then the RAI.

Thanks again for your info, and the same information you gave me that body scan is diagnostic only, yes, same. Wish me luck.

Any time you are to get RAI,
Any time you are to get RAI, the LID (Low Iodine Diet)should be followed, whether its for a diagnostic scan or a treatment dose and scan. You want the thyroid cells (cancerous or not) to be deprived of iodine and therefore more "hungry" to soak it up.

We take thyroid medication to keep TSH suppressed...to keep TSH from activating those thyroid cells into growing/spreading.

However, the blood work is more accurate if stimulated, meaning your TSH is elevated. TSH is stimulated when you are hypothyroid from being off your medications(often called "Hypo Hell"), or staying on your med and getting Thyrogen injections.
.
Isolation is usually not indicated when given a low diagnostic dose of RAI, but if the Whole Body Scan indicates abnormal iodine uptake, and blood work shows your Tg(Thyroglobulin - a protein thyroid cells release) is elevated or rising, an ablation dose may be recommended. Maybe they just want you to be prepared for that possibility?

Its a lot to learn...don't give up trying to understand!
Good Luck!

Lilypr

Finnegan1 said:

Good luck
Good luck with your scan. And I think we all know that feeling of mood swings, loneliness, and depression at times. I am nearing the end of my LID, and think I am about to be told I have to re-do it because of scheduling problems. So, great, here I go again. But, like Nasher said once before, small price to pay, if it beats the cancer!
I wish you luck, be well, and keep us informed of the outcome if you feel like sharing!

Thanks....
For understan and your words, it helps me a lot. And the expresion of Nasher made me laugh (in a good way)and yes...I'll keep it up. Sorry about your re-do LID sometimes it feels it's a longggg way. I wish you luck and be well too.

Once again, thanks...I'll keep you informed (it helps when you share)

Lilypr

jones512 said:

Any time you are to get RAI,
Any time you are to get RAI, the LID (Low Iodine Diet)should be followed, whether its for a diagnostic scan or a treatment dose and scan. You want the thyroid cells (cancerous or not) to be deprived of iodine and therefore more "hungry" to soak it up.

We take thyroid medication to keep TSH suppressed...to keep TSH from activating those thyroid cells into growing/spreading.

However, the blood work is more accurate if stimulated, meaning your TSH is elevated. TSH is stimulated when you are hypothyroid from being off your medications(often called "Hypo Hell"), or staying on your med and getting Thyrogen injections.
.
Isolation is usually not indicated when given a low diagnostic dose of RAI, but if the Whole Body Scan indicates abnormal iodine uptake, and blood work shows your Tg(Thyroglobulin - a protein thyroid cells release) is elevated or rising, an ablation dose may be recommended. Maybe they just want you to be prepared for that possibility?

Its a lot to learn...don't give up trying to understand!
Good Luck!

Thanks Jones512
All the information you gave me it helped me to understand a lot. I'm going to talk about this with my doctors. You know, with all this process I've learn something and it's that there's a lack of information when it comes to us (thyroid cancer patients), at least have been my case. All this year I saw different doctors and no one guided me about this. Maybe it's been my fault in some way because I didn't asked enough. But with this experience I'm going to do MORE research because something I've learn too is that fears come when the patient DOESN'T have all the information, and we as any other cancer patient deserve that.

Thanks for the information and you bet I won't give up.

Finnegan1

Lilypr said:

Thanks Jones512
All the information you gave me it helped me to understand a lot. I'm going to talk about this with my doctors. You know, with all this process I've learn something and it's that there's a lack of information when it comes to us (thyroid cancer patients), at least have been my case. All this year I saw different doctors and no one guided me about this. Maybe it's been my fault in some way because I didn't asked enough. But with this experience I'm going to do MORE research because something I've learn too is that fears come when the patient DOESN'T have all the information, and we as any other cancer patient deserve that.

Thanks for the information and you bet I won't give up.

update?
How are things? Better understanding for you I hope.
I am in isolation recovering. Things were rough, but they aren't for everyone. You are right, there seems to be a shortage of information on this particular cancer in many hospitals. Luckily, with this web-site, you have a great resource. Also try THYCA.ORG
if you haven't already. My doctor recommended it to me. Good luck to you!

Lilypr

Finnegan1 said:

update?
How are things? Better understanding for you I hope.
I am in isolation recovering. Things were rough, but they aren't for everyone. You are right, there seems to be a shortage of information on this particular cancer in many hospitals. Luckily, with this web-site, you have a great resource. Also try THYCA.ORG
if you haven't already. My doctor recommended it to me. Good luck to you!

So long right?
Hello Finnegan1...sorry I never got back before this time. Last year, after the whole body scan results, the results came back good, everything was (and still) in control...whithout CA thanks the Lord. But after that I was having hard time to get my life back, everything changed, mi body doesn't want to respond sometimes (specially when is about having energy to keep up)...but still hanging in.

And yes, I receive information and participated in a web survey @ thyca.org they also have (besides this site of course) very good information for patients and caregivers.

Thanks for the support. Be Well.