Hello everyone. Quick recap - diagnosed with follicular thyroid cancer in July 06, thyroidectomy August 06 and RAI September 06. Felt a lump in my throat June 07 which my GP ordered ultrasound but assured me it was fine. Oh silly me for listening but endo is 70 miles away and it was just easier to believe I was ok. Follow up visit with endo revealed elevated TG ? levels. Surgery #2 took place in November 07 with a radical neck dissection. Had RAI in May 08. Body scan revealed 2 highly suspicious lumps in the neck. Having bloodwork this week. New endo is taking a wait and see apporach. He states that the RAI may still work and doesn't want to do anything more until September when he will again do blood work and an ultrasound. Third surgery is not out of the question. My voice is already severely impaired as the tumor was intertwined with one of my vocal cords. My dilemma is this-if they order RAI again doesn't it make sense that if it hasn't worked to this point it is probably not going to? I already have considerable scarring on my lungs and dosing me again is just going to make it worse. Anyone experiencing recurrences?
What was your RAI dose the first and second time? What was your tsh kept suppressed at afterward?
If you feel uncomfortable waiting, and are having discomfort from the growths, I would consider getting an opinion in NYC at Sloane, or I think there's a big hospital in Philadelphia that has great doctors.
I wouldn't want a doctor managing a recurrence unless I could have total faith in him, and you want someone with extensive cancer experience, it's also good to have a good nuclear med/radiation oncologists opinion if RAI will work.
It's very common to treat a recurrences with higher and higher doses of RAI---there's one doctor that has a book out (I'll look it up) that believes in megadoses, but you need someone who specializes in it to determine if it will work in this situation.
I believe the Doctor that Reece is refering to is Dr. Kennith Ain. He is co-author of "The Complete Thyroid Book" and believes in a process called Dosimetry. This is where they determin what the highest dose of RAI your body can safely handle and that way it has the best possible chance of eliminating the cancer cells. Sometimes, your thyroid cells will still take up the Radioactive Iodine, but if the dose was not high enough, it did not eliminiate all of the cells. As long as your cells are still taking up this iodine and they can be seen on your scan, then there is still a chance that a higher dose of RAI can eliminate them! Keep the faith and remember to stay positive
Thanks to all for responding. Sorry I took so long but believe it or not I just got all the info today. My RAI doses were both at 155 mci. Blood work as follow:
On 3/20/08 - 4 months post surgery, pre RAI
On 7/2/08 -1-1/2 months post RAI
Now maybe my insurance company will approve the pet scan my doctor wanted to have done in October. Too little too late if you ask me.
Uptake scan showed hardly any uptake in thyroid area so my understanding is that this means it has spread to other places in my body. And if all these little sharp twinges of pain I have been getting in my bones since October are any indication that would be my guess. Of course I could just be paranoid. Any input would be greatly appreciated.
My doctor said the thyroglobulin can jump before you can necessarily find the spot where the recurrence is---in other words, it can be teeny tiny, and not even seen yet----which would also mean it's not necessarily an emergency.
Every time my neck aches, or my throat gets sore, I assume it's a recurrence, so I can imagine what you are feeling.
Your uptake scan was just of the neck, and not the whole body? We had someone here with follicular to the rib bone, archie (I think his threads are archie wilson)---he had one dose, around 150 millicuries range, then had another larger one because even though his pet scan didn't find much, his thyroglobulin had gone up.
Archie had found his thyroid nodule (in the 2 cm range) after he had broken a rib due to follicular to the rib.
I'm glad you are getting the pet scan, that should hopefully ease your mind, let us know how it goes!
I'm sorry to hear about all you are going through...
I did a search on metastatic thyroid cancer---and I've found some information about "blood vessel inhibitor shows promise against metastatic thyroid cancer".
..."the investigational drug, motesarib diphosphate, is a VEGF inhibitor, a biologic agent that targets receptors on a protein known as vascular endothelial growth factor (VEGF). VEGF is instrumental in angiogenisis (formation of new blood vessels), a process that allows tumors to grow and spread.
Study lead author Steven I. Sherman, MD is chair and professor of M.D. Anders_n's Department of Endocrine and Neoplasia and Hormonal Disorders, noted strong evidence that VEGF receptors play an important role in metastatic thyroid cancer..."
M.D. Anderson is a top-notch hospital---I know several people who've gone there for cancer and for endocrine treatments/surgeries.
I would contact the hospital and see if you can contact the doctor who is heading up things. I've had more frequent and better response to my requests from super-star specialists---than I have my local doctors.
Thanks everyone. Sorry Reece - I may have been a bit vague. I did have a whole body scan. What I should have said was that first I went for the tracer pill and then the scan of just the neck area. I am unsure of the lingo - though. When I went back later that week for the "big" pill is when the Dr. told me there was not much uptake in the thyroid area and wanted to know what my pet scan had shown which of course I did not have. He then said and his exact words were, "well let's just try it anyway." Sounded to me he wasn't sure this was going to work. According to my endo the body scan showed two suspicious nodules (tumors) in the thyroid area. So that is where I am at. I am so grateful for all your responses. I get answers more quickly here than I do from my dr. Where is the hospital you were talking about?
Not sure if you're asking me about where the hospital is...
It's in Houston, Texas---but according to the article I read---there are 42 institutions that are participating in the study.
Good luck and keep us posted!
I'm so sorry to hear of your metastatic thyroid. I've been told I have nodules in and around my thyroid, since having an ultrasound done 2 days ago.
I had gallbladder surgery 9 yrs ago, and noticed that my voice sounded different, I just thought maybe they scratched something with the tube that was inserted.
Tried to convince the doctors  for all these years that something was amiss.....now they believe me. I hope it goes well.
Sometimes doctors are the most hard-headed s.o.b.'s you could ever meet!
When will they understand that these are OUR BODIES and we know them and how they operate, better than they can tell us.
Best to you in your recovery, I will pray for you if you don't mind.