Thyrogen for ablation after thyroidectomy

[Susan312]

I am 59 years old and had surgery for multifocal papillary cancer with follicular variant and one positve 1 cm pretracheal lymph node (stage III) on June 2, 2008. I also had Hasimoto's thyroiditis throughout my thyroid shown on biopsy - previously undiagnosed. I just met with my edocrinologist who has recommended that I have remnant ablation and whole body scan with 100 miC of radioiodine following two injections of Thyrogen instead of standard therapy using thyroid replacement withdrawal.

I am attracted to the thoughts of not having to be hypothyroid prior to ablation and WBS, but am concerned that the TSH stimulation and iodine uptake after Thyrogen may not be as effective as standard treatment using thyroid hormone withdrawal. My greatest concern is that the staging of my cancer using the WBS may not be as reliable using Thyrogen as standard approach. Because I have hasimoto's I probably have antibodies to thyroglobulin so will not be able to use the thyroglobulin blood test to monitor for recurrence of metastasis.

Has anyone had experience using Thyrogen for intial ablation and WBS?  Does anyone have reliable information on the efficacy of WBS after Thyrogen TSH stimulation in staging of papillary thyroid cancer that is not from Genzyme?

Any help you can offer to help me decide whether to follow my doctor's advice to use the Thyrogen rather than thyroid hormone withdrawal would be greatly appreciated.

[dscoochie]

I am doing thyrogen for ablation and I completely have 100% trust in its efficacy!  

I know many other women who have also used it for ablation and although thyroid cancer help (a forum) says its not as effective, I dont think there is any proof that *that* is the case and that is why its been approved for ablation.  

I think of it like an epidural - why suffer needlessly?  But you have to do what you feel is best for you, considering the advice of your doctors as well as your own research findings.

Good luck with your treatment.  I start my LID Aug 1 and RAI is Aug 15th.

[nissah46]

I used Thyrogen for ablation and was assured by my endo oncologist and local endo that it is reliable, even though some doctors still do not use it.When I questioned my Doctor about this other way of thinking, he said it is outdated. Good luck.
Trish

[pep88]

Who would "elect" to go hypo on purpose... really?

Not me.  

And just a disclaimer to be added that I didn't even want to do the RAI in the first place...  (My cancer was small and had not spread...and I have no history with Hashi's or thyroiditis, in fact I had no prior thyroid history what-so-ever!)  That said, my doc felt that the RAI would not do as good of a job on the cancer the "first time around" if we didn't go completely hypo and do the whole LID thing.  

I am one year post TT and RAI, and he now recommends Thyrogen for the second scan.  Ok, so TG!!!  (Who'd want to do that again!)   I'm not well versed on what the latest protocol is (I trust my doctor though), but how can a drug do magically, what your body takes weeks to do itself?  I will trust the drugs the second time around, but my life and my money are on the old fashioned way for the first time around to KILL that cancer....  I like my life, why take chances?  

[Liz94]

I agree with completely with Pep88.  My diagnosis was extremely similar to yours Susan312 and my doctor had me go completely hypo for the RAI.  He believes that you just don't want to take chances if you don't have to. Seeing that I didn't know any different at the time I went ahead and did it. I just finished my 2 thyrogen injections for my 6 month follow up and took my small dose of RAI yesterday for my scan tomorrow. Was this way better? HECK YEAH!!!  But I do think for that first ablation I did the right thing by going hypo. I think it's just a matter of opinion.

[Susan312]

Thank you all for your feedback, it helps to hear from others who have used Thyrogen.

In my research I found that the FDA only approved Thyrogen for ablation in December 2007, so most people I have talked with in my Thyca group did it the standard way.

I have decided to go with my doctor's recommendation and to take the Thyrogen for ablation. It has not been approved for treatment of recurrence or metastasis, so I would have to do the standard approach of thyroxin withdrawal if anything shows up on the WBS.

I based my decision on the quality of life issues - I suffered just in the short amount of time I was hypothyroid after surgery - and on the fact that my doctor plans to use 100 miC of radioiodine, which he tells me is the maximum recommended dose for ablation. I figure that the high dose helps to offset the possibility of having a lower TSH when I receive the RAI than I would if I did the withdrawal.

Thank you all,
Susan312

[dy11]

I had standard treatment in 2006 for cancer.  Off meds and then RAI and then WBS...My first follow up scan n 2007, I did the thyrogen shots...I think the other posts where accurate in saying that the first initial rai to kill the cancer should be standard treatment but for follow ups, I trust the thyrogen.  Let us know how it goes.

Dyan :)

[Susan312]

When you did your RAI using Thyrogen, did you take synthoid right up until the day of your first injection, or stop it a few days ahead? My endo said 3 days ahead if he was using 30 miC but right up until the day of first Thyrogen since he is going to use 100 miC.

Also, did you do the LID for 15 days ahead?

Have you had any subsequent evaluation of thyroglubulin to determine if the RAI ablation eliminated all thyroid tissue?

Thanks,

Susan312

[nissah46]

Susan, I NEVER stopped synthroid, even for one day.  Check with your endo to clarify that, but my understanding is you don't stop your synthroid at all.  This was the case for ablation and follow up scans.  I had 200mci of RAI.  I did the LID for 15 days each time.  I recently had a follow up scan, and my thyroglobulin was tested that morning, prior to the scan.  The results were available later the same day, and there was no detectable thyroglobulin, which is what the doctor wants.  Thyroglobulin should be checked about every 6 months for follow up care.  Let me know how you get along, and good luck.
Trish