My daughter's journey pt 2

I also wanted to see if anyone's endo skipped the scan and went right in for the RAI? My daughter's endo just wants to do the treatment, not scan her first. Is this normal?

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My 10 year old had TT and 18 nodes removed on 9/9/13 and is having RAI on 10/24 but 1st she will have WBS and CT Scan 10/23 (i123 dose on 10/22). She has been on LID since 9/8 and without meds since 9/1. On 10/31 she will have another WBS to see if additional areas of uptake are noted. She is being seen by endo at CHOP's Thyroid Center. Papillary both lobes and 3 nodes confirmed.

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I've had 2 RAI treatments, and a WBS before and after each of them. He may not be doing the scan because he knows he will do RAI anyway, but I believe most drs do the scan before, so I'm not sure why he would deviate from the norm. It won't make a difference in how well the treatment works, it will just keep them from having a comparison scan.

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I didn't have a WBS before my RAI. I didn't have the scan done because we would do RAI regardless.

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The scan can be helpful for determining the dose needed. Uptake from the low dose shows up and includes uptake in the residual tissue and lymph nodes. The dose can then be calculated according to the weight in grams of the remaining tissue and lymph nodes that need to be ablated. Thereby, it allows for more accurate dosing. Have they told you what her dose will need to be? I'm so sorry she is going through all of this and I know it is difficult for you, too.

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I guess I was hoping against hope that she wouldn't need the treatment. I have no idea how he will know what dose to give - I guess that's why he gets paid the big bucks! I am scared to death about this process - more so than the surgery. I don't want her to have it at all. I am sure that's unrealistic of me.

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Cmich, my daughter was diagnosed when she was 17 and had a TT with 7 of 20 lymph nodes involved. Her endo did not do a scan and went for the RAI. She 166 MiC of RAI. Your daughter's endo will know how much to give her based on the pathology report...how many and how big the nodules were and how many lymph nodes were involved, etc.

What you are thinking is not unrealistic at all. Of course you don't want her to have radiation let alone cancer. Kids are supposed to be enjoying themselves and doing kid stuff not having to deal with all the cancer crap. I know what you are going through as a caregiver. It's very hard and you will run a gamut of emotions. We are here for you and ask questions if you have concerns.

Hang in there.

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There is a youtube video about thyroid cancer with a Dr. Talebi in Florida. He says many centers now forgo the pre-scan. At my university-based thyroid cancer center, they no longer give prescans for several reasons: they said i123 is very expensive. There is also the risk of stunning, even If using small doses of I 131. Another concern is why to even do the prescans, because the dose may not pick up cancers, so therefore can give false reassurance. Then there is the amount of time you go back and forth to nuclear med. My dose was primarily determined by my path report most importantly, my age, variant or not, family history and results of post op lymph node mapping. I will try to find the link addressing the no prescans theme.

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