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thyrogen 14...body scan negative...dr says to come back in 4 months and insurance coverage

MLG
Posts: 52
Joined: Mar 2010

I heard from my doctor about my body scan being negative w/Tg being at 14.

He said to come back in 4 months after having blood work done at that time. (Did not order PET/CT)

I am setting up an appt. w/an oncologist w/Illinois Cancer Care to get a second opinion.
I am eager to hear what he has to say.

The problem is that he and the cancer center is not in our insurance plan. Which means if he orders a PET scan or anything else then it won't be covered.

Has anyone been in this situation and did you decide to wait like the doctor said?
I know it is my health/life we are talking about, but to not have a procedure covered by insurance is out of the question.

butterfly123
Posts: 52
Joined: Feb 2010

Sorry to hear about your insurance issues? Is there another endo or hospital you can go to who is in your network? Did he at least order another Tg blood test (now and not in 4 months)? If not, call the doc office and get another script. I would definetly make sure the TG level at 14 is accurate.

As I mentioned in a previous post, sometimes the RAI tracer dose is not enough to show the thyroid cancer (TC). You could actually have the full dose and the TC would light up. But PET seems to be the next course. Also, if TC shows up on a PET (and not on a WBS) then it has started to dedifferentiate meaning that it is hungrier and more agressive than differentiated thyroid cancer.

I hate to say this but you may want to find another endo who is more aggressive. My original endo was very passive and wanted to watch and wait with me too. That was not going to happen. I quickly found another endo who was determined to help me (I am so thankful!). I have a RAI resistant tumor in my C2 cervical spine. I could have very serious issues if I would have watched and waited as my original endo suggested. I wonder if he would take the watch and wait approach if he had cancer in his body....probably not!!!

Let me know what you decide to do and make sure that Tg level is accurate!!!

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