# RAI or Not



## Tara1313 (Mar 11, 2014)

On May 7th, I had a total Thyroid removal. They found cancer Stage 1 T3. The pathology and the surgeon says that he removed all of the cancer. I am 42 years old, now the thought do I RAI or not. My pathology was not clear even to my endo. Before this whole Thyroid issue, I wanted to try to get pregnant. If I get RAI, I can't and I just feel that I am too old to get RAI and then wait the year to try then.

My Endo is on the fence if she thinks that I need RAI or not. Per conversation, we are thinking about doing the full body scan - the issue with that is that there is still after surgery uptake in the throat- so if there is lingering cancer in my throat area we won't know, but if it went anywhere else then we'd know.

I thought if we do the scan and if it is ok, then I try to get prego and then do the scan again after to see if I should proceed with RAI. I was told my chances of reoccurence of thyroid cancer if I do nothing is 5 to 10%. There is a .5% chance that I will get a secondary cancer if I do RAI and there is no information on the percentage if we just keep me hyper.

Any thoughts, anyone just do the scan? I am told that I am still young and if I was three years older they would insist on RAI.

Please tell me your knowledge on this.

Thanks

Tara


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## joplin1975 (Jul 21, 2011)

Tara,

Just for our information, could you share the details of the pathology report?

If I were on your shoes and a baby was a priority, I think I might even skip the WBS and focus on getting your lab work stabilized. Once that happens, get pregnant as soon as possible (well, I mean to the extent possible etc). Then revisit this issue.

Thyroid cancer is slow growing. Your surgeon got the central tumor. Unless you have a particularly aggressive kind of cancer, it should be ok to delay for a bit.


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## Tara1313 (Mar 11, 2014)

Joplin thank you so much for responding. I think they are nervous because the surgeon said that although he was able to remove the cancer it was a bit stuck on the trachea but he did get it all. Here is the Pathology:

Thyroid Gland (15G) Total Thyroidectomy

Papillary carcinoma of the thyroid

1.2 cm Involves the isthmus and righ lobe inferiorly, papillary and follicular architecture, with associated sclerosis and calcification, Focal minimal extrathyroid extension in the region of the isthmus, inked surfaces are focally close but negative for carcinoma

Papillary Microcarcinomas

mid right lobe, 0.1-0.2cm with sclerosis and calcification, confined to thyroid, superior left lobe 0.1-0.2 with sclerosis and focal minimal extrathyroid extension, inked surface is close but negative for carcinoma, mid superior left lobe 0.1-0.2cm confined to the thyroid

-follicular adenoma 0.3-0.4cm righ lobe inferior

-hyperplastic nodule, 0.5cm left lobe inferior

Cancer staging

pT3 NX MX (Stage 1)

Thanks

Tara


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## joplin1975 (Jul 21, 2011)

Hi Tara,

Yup, that's pretty darn common (having "stuff" left over, that is). Honestly, looking at your path report, the new ATA guidelines would put you firmly in the "No RAI" camp. You should, technically, be monitored with bloodwork and ultrasounds and yearly WBSs.

While the I-123 they use for WBSs is not nearly as dangerous as the I-133, if I were preparing to have a baby, I would just try to avoid as much radiation as possible.

And, for the record, I had a pretty decent sized dose of RAI and am really grateful for the peace of mind it gave me, despite all the not so pro-RAI viewpoints popping up these days. So, I fully appreciate your concern.  I just think, if the babe is the priority, go for it. This stupid cancer stuff can wait.


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## Tara1313 (Mar 11, 2014)

You rock. You actually brought tears to my eyes. I have to pass by my husband, but I think that makes the most sense. It is slow growing -so dealing with it later shouldn't be an issue as much. Same treatment --probably...right?

Thanks

Tara


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## joplin1975 (Jul 21, 2011)

Yup, same treatment. You will likely have a detectable thyroglobulin number which might feel a little freaky. Just watch that number over time. Small changes now and again are expected, but if you have a significant jump and/or something really suspicious on the ultrasound, then you can change course and consider RAI at that point (which hopefully *fingers crossed* will be after you have the kiddo  ).


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## Tara1313 (Mar 11, 2014)

Thanks, I hate making these decisions. But, my thought process is that even if I have a reoccurence it isn't the worst thing and at least my daughter (hopefully) will have a sibling for their lives vs. her being an only child.

on a different note, have you seen if the nurse and that other person that were having their thyroids out a couple days before me- I believe May 5th if they have reported in? I haven't seen them around the boards.

Just curious.

Thanks

Tara


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## nel (Jan 22, 2014)

I had a TT Apr. 9, 2014, which ended up being PTC. The nodule was 3.7cm encapsulated with follicular variant. I talked with a Nuclear Medicine Dr. last week who based on the American & Canadian thyroid guidelines of being less than 4cm, encapsulated & no lymph nodes is going to re-check tumor markers in 3months with bloodwork & ultrasound.

We've talked about having another baby too, worry if pregnancy increases risk of recurrence? I guess it's a matter of keeping the TSH low, but if it's going to recur it would happen whether pregnant or not, just maybe sooner with pregnancy? Not sure.

Agree with Joplin (she is wonderful!). Does your ENDO know you'd like to try? Wonder if they are able to tell anything from an ultrasound rather than a scan?

Good luck


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## Tara1313 (Mar 11, 2014)

Thanks Nel, and I am not sure what PTC stands for. But, that is great news for you. In my case everyone is so up in the air not knowing what to do. They are all really good dr.s, but they want to be more cautious. Not only that, but because my Endo does know that I want to conceive is why she is up in the air. She said that if I didn't want to try for a baby she would tell me to have the RAI. The surgeon is suspicious that it may have broken off and gone somewhere else. So last night, my husband and I decided that we are going to do the scan to make sure it is not in my lungs cause once I get pregnant and if it is in my lungs then what! if it comes out negative then we will try in Sept/ Oct - hopefully enough time for the test Radioactive leaves my system and to get my levels in the right place.

Too many decisions not enough time. I tell you Joplin and Andros got me through all of this. The support and the knowledge is right on. You really helped me and my husband make these really hard decisions. Some people that have had these procedures don't know much about it - and some people don't care to know. But you guys really have given me the knowledge that I seek and couldn't find from on resource. GOD BLESS you.

Nel, I asked my Dr. if pregnancy will advance anything that may be growing or would it grow at the same rate. She said that it would grow at the same rate. PS. Listen to Joplin and get pregnant and deal with this cancer crap later . God bless and please do tell me if you get prego.

Smooches to all


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## nel (Jan 22, 2014)

Thanks Tara, I think that's a good decision. Do the scan. I'll see what the next ultrasound & set of blood works says. Hope everything is/will be good, & you'll update.


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